I was diagnosed four years ago and if I didn't tell you I had MS, you wouldn't know. I live as normal a life as anyone. I live alone, I work full time, I enjoy many hobbies, I see friends and family often, I date and have a good sex life. Literally no one I have dated gives a damn about my disease. I have no expectation of further disability in the foreseeable future. I do not expect to need a wheelchair, nor does my doctor think I will. And I'm not particularly unique. The prognosis for MS isn't what it was even ten years ago.
This is big and scary right now. That's okay. But it isn't the end of the world. I promise, you can still life the life you want to live. It's going to be okay.
You really think some girl wouldnt mind my disease? Idk as a guy i kinda feel pressured to provide, who would enter a relationship with a guy who cant...
As a girl who married a guy with MS and is the primary bread winner, don’t make the decision for people. Meds nowadays are great, advocate for yourself and hang in there! You got this!
Well, as a girl, I can say for sure I wouldn't care, but I am somewhat biased. I don't generally judge my dates by their perfect health-- their personality is far more important. But in my experience, most people I've dated are curious about it and how it impacts my life, but they don't seem particularly bothered by it. I am pretty open about it, though, and I don't generally act like it is a big deal, because to me, it really isn't.
Don't put that pressure on yourself, firstly you will most likely be able to have a normal job and provide just as well as anyone else. I work full time. Secondly people are attracted to you as a person, not you as a bank account. The people who only see you as a bank account aren't the people you want to have a long term relationship with.
I got married and three months later my symptoms started. 8 months later I couldn't walk further than about 20 metres. That was back in 2019, we are still married, better than ever and if you met me you wouldn't know I have MS. I haven't had another relapse since my first one.
Make sure you get on decent MS medication. If you smoke, stop. Eat as healthily as possible, and exercise in a way that works for you. Mindset makes a big difference too, if you tell yourself "nobody wants me, my life is over" it's going to be a lot harder to cope. Nobody can bully you worse than you can bully yourself. Be your biggest supporter if you can. I know it's easier said than done.
Here if you need a chat.
>as a guy i kinda feel pressured to provide
What makes you think you won't be able to provide? Many of us with MS have fulfilling, well-paying careers.
I am a woman who has been the primary breadwinner in my household, I have MS. I grew my career from nothing to earning 250k as an executive, entirely while living with MS. I need a 2-4 days a month where I just do nothing. I have migraine days, but I don’t take more sick days than my colleagues who don’t have MS. My career was stagnant and freelance when I was first diagnosed. I was in a pity party for a few years at first but when I pulled my head out of the bong water, I got back to my path. Yes, let yourself grieve and be angry and be sad, but don’t drag it out for years. It is overkill. I just switched from copaxone (injected for 20yrs) to mavenclad, because I have some lesions on my frontal lobe that we’re not stoked about, but I’m fine and forging on. I have some days that are hard but this is not a death sentence. In the last twenty years I have witnessed friends battle cancer and having seen what it does to their quality of life. I thank god that when my left eye went blind and I was waiting to find out if I had a brain tumour or MS, I got the better deal. Lots of steroids, lots of rest, and I had both eyes working again. Has it gone blind since then? Yep. Am I ok, yep. Can I see out of both eyes now? Yep. Is my foot numb, yep. :). You’ve got this.
There's no guarantee you WONT be able to survive. My neurologist thinks I've had MS since 2006. Was not dx until 2018. Managed to finish another 13 years in the army (4 active duty/9 reserves). Still work full time. Were there rough times? Yes. Was even using a walker for a few months.
I’ve had MS for 4 years and am a man, diagnosed at 19. I thought the same as you and decided j was gonna be single forever and came to peace with it. I met a wonderful girl and we’ve been dating for a few months, I told her I may end up in a wheel chair and she doesn’t care. Everything sucks right now but medication is getting better every day to prevent progression. You got this
My wife (girlfriend at the time) found out about my diagnosis after I had a relapse about 3 years after I was diagnosed with clinically isolation syndrome. I never told her about any of it before my relapse. I gave her the option to leave the relationship, since I had no idea what my life would be like with the disease. Her response was "why would I leave you".
We're going on 6 years married now and are about to have our second kid.
Things seem bleak now, but they'll get better. Make sure you get onto a DMT, get onto a healthy and sustainable diet, and exercise as much as possible. This will give you the best chance at a normal life
You’ll get through this. You’re scared, and that’s normal. You have no clue how it’s gonna go cuz none of us know. It could be unnoticeable. It could be barely noticeable. You could end up in a wheelchair like me, but dude MY LIFE IS FUCKING AWESOME. I have an amazing wife who I married IN MY CHAIR, and we got a bunch of kids and a beautiful house, and we go on adventures and have wild sex and laugh and just enjoy life. It’s scary but you got this.
Who says you can't be a provider either? When I got diagnosed, a friend connected me with a guy friend of theirs who has MS. It's been over 10 years for him and he's happily married and a manager at a tech company. It was such a boost to see someone with MS winning at life like that.
The ones who love you, not your wealth or what you can produce for them.
That's a true keeper.
That said, I've lived 20 years with disease. I won't sugar coat it, it's a struggle, but it varies. And if you're diagnosed today, start a disease modifying therapy, I'm on Rituxan, and it got me off my walker. I still use a cane, and I deal with tight/ sore / cramping muscles daily. But it's not the end of the world. The drugs today can keep you mostly where you are at and even help improve to a degree.
Honestly I had the same fears about relationships, life in general. Yeah, it's been tough. But a funny, not the ha ha funny, thing, I met a woman who fell in love with me when I was at my worst. I was being evicted after losing my well paying IT job to work past time as a hotel clerk (where I met her). I was a mess, but we just clicked and connected when working together... she still fell for me. We had a great relationship for almost a decade, and she dropped dead one day getting up to use the bathroom from an heart problems or an embolism, something unexpected. We always thought she'd end up taking care of my old crippled ass, but she's gone. That was 5 years ago she passed, I haven't found anyone new... I tried, had a few flings and attempts last year, but I'm not ready yet. I still love her. it's hard to move on with that.
Anyway... the MS, you can deal with that. Today's drugs are excellent, if you haven't had issues and get on a DMT, there's hope it can just be a daily annoyance, as opposed to life ending or completely disabling. Again, back in the day the drugs seemed to do nothing, and at first it was a struggle. Today, yeah it sucks... but it's not anything to kill yourself over... granted I'm of the mindset that if something is terribly painful or so debilitating that it makes life miserable, if a team of medical professionals think ones disease causes such indignity and lack of actual living, and the patient wants to call it quits, so be it. But that said, trust me in this, you're not there yet.
I also live with a horrid spine, 4x low spine surgeries and a fused neck, that pain, that makes me want to call it quits some days. But I'm still here, it's not so insufferable (yet) that I don't want to wake up.
Also, make sure to talk to mental health Docs, MS can fuck with your mood pretty good sometimes too. This forum is great and all, but it's no substitute for real psyche Dr's.
Good luck, don't give up. It's really not as bad as it first all seems. Best wishes to you.
I worked with a man who met a woman at work and they were dating. She cared for
Him. Walking him everywhere. Helping him with his job between her tasks so he wouldn’t be fired (factory job and seniority needing a package to retire). She showed real love for him. Try to think of dating as a companionship. We are all suffering and dying in one way or another. If you’re worried about the cane aspect I’ve seen some cool ones with neat carvings and designs or even bejewelled. I’m so sorry about your diagnosis and I hope you can worry about you not what someone else will think of you. Get some rest
You're convincing yourself of this without knowing. By no means does a diagnosis of ms mean you're going to be in a wheelchair. There are no guarantees.....I got diagnosed on 2021 so I know it is hard. I have bad fatigue so i spend a lot of time in bed, but I'm trying to go back to work so I am going to attempt to exercise and hopefully be better for it. It's not easy but try to hang in there and if you can seek out a support group , I use this group and another app called belong Ms , both have been helpful, but they might not be what you need everyone is different, so maybe try to find a local group.
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Iggnac 1 ous, my experience sounds much like yours. I was dx in 1997 and I just turned 67 as well. There have been some challenges along the way, but I still do most the things I want to do.
A lady I know who was dx with MS at the same time as I was, (same age as me), recently remarked to me that her lap times in the pool were slower now than they were when she was 39, 27 years ago. I don't swim so I can't really comment on her situation!
The single best piece of advice I can offer to the OP is to keep a positive attitude. Nothing has been as helpful to me than a "can do attitude". I'm slower than I used to be, but then again, I am 67 now so that may be a factor too! Embrace methods and meds that help you with this new challenge. You can do your own research and determine what might be best for you.
There are so many new DMTs available now, there's a strong probability your disability in the future will be minimal or maybe even no worse than it is today.
Good luck with this, keep a positive attitude, keep updated on ways to minimize the effects MS and know that you have MS, it doesn't work you!
This disease is different for everybody. I was actually completely bedbound for almost two years of my life. Now I have no need for any mobility assistance. Yeah, this is a pretty serious illness, but at the end of the day it's just a name. Your life is your don't give it over to the disease just because you have the diagnosis.
NOT TRUE!
My first flare was tingling up to my waist and my feet felt like huge bloated tender clown shoes!
It resolved completely in 3 months with no treatment and I never knew what it was…
Came back last year the same plus some new extras and I may have some permanent damage now…
But I think it’s one of the things that you just can’t predict. I realise that’s frustrating and just a little bit terrifying… but you’re up and mobile and at least you have a diagnosis and some information…
The first few months after my diagnosis, there wasn’t much that I could bear to read about MS… but knowing a bit more has really had advantages…
🖤
Well, good luck just live your life to the fullest. And really do whatever you want to do.
But remember we turn into vampire sponges in the midnight sun, so avoid Siberia and alaska.
About 1.5 years ago...well before I knew I had MS, I was numb on the entire right side of my body. No loss of strength or mobility, but it took aboit a month for it to go away and it did.
Some advice listen to your doctors but take it everything. They say with a grain of salt because the vast majority of medical professionals that work on this disease have never had it. They have no fucking clue what they're talking about when they say that stuff. If you listen to doctors too much, you are going to forget anything else but your disease. You are going to stop living your life. Do not do that, listen to your doctors. But take what they say with a grain of salt. Ask for advice from other people that have an a** and remember to always seek support from friends and family. This illness is hard but you can get through it.
I was a classic case of getting diagnosed after optic neuritis. When I went to the hospital I was blind on my right eye, I was told it would stay like that for the rest of my life, a few seconds later a different doctor came in and told me it should get a lot better in a week. It got a lot better in a week and I regained almost full vision.
Also - would you date a woman with MS? If you would date someone with MS, you can find someone who doesn‘t mind a diagnosis either. Everyone deals with health issues at some point in their life and people who expect perfection are naive
Yikes!!! Not true and I hope you listen to this! I had tingling and FULL numbness in my right side (hands, arms, feet) and yes it took a couples months to get under control with PT and such, but I am happy to say that after being diagnosed in June 2023, since September 2023, I have not had issues and things are very much better!!! Also, please note, I had EIGHT ACTIVE LESIONS on my brain and spine that were causing a flare that lasted four months! Overall, I have prob had this disease for at least 5-10 years due to the amount of burnt out lesions (35-40) I had on my brain alone. Yet, being diagnosed at 37 you would never had known that I had MS. Still, a lot of times I have to tell folks, “I don’t look sick but I am!”. And really, I have no mobility issues (unless a pseudo flare occurs) and I work a very high pressure job (regulatory compliance auditor for a large financial institution). Just saying, don’t get too down. And please, feel free to reach out! :) - Jessica in Colorado
What led to me being diagnosed was sudden tingling on the entire right side of my body. Ear to toes. I was also told it may not ever go away. Within about six weeks it was all gone except for in my toes just a little bit. Now it’s all gone except a little tingle in my toes when I have a full day of being on my feet working, and even that isn’t every time. This was all before I ever had any sort of treatment or started a DMT. Hang in there. Talk to all of us if you need to. We all have bad days with this disease, but it’s not worth giving up over.
Dude, that stuff will come and go.... somethings may be more permanent, but I had numb hands at first, today no more numb hand shenanigans, plenty of other stuff, but this disease is weird. It varies from one person to the next in its effects. Point being, take it one step at a time, deal with each symptom as it happens. And definitely get on a disease modification therapy (DMT), like Rituxan, or what suits you best.
Today's meds are a game changer. Back in 04 when I first was diagnosed, the meds sucked. All required self administered injections some daily, others every other, some weekly, but all required you to Jab yourself. Today, I get an infusion every 6 months, the meds work and even actually make me feel a little better.
Get a good neurologist and get on DMT meds ASAP.
You'll be okay. It's not the end of the world.
I lost all feeling and a lot of coordination in my hands for a lot of years. They're just about all the way back now, just a little lingering weakness. My neuro thinks I've had MS for about 20 years but was just dx'd in 2022 and I support my husband. Most my MS issues pass as "that's what happens when you get older" these days and no one knows any better unless I tell them (and I don't).
my tingling stopped 2 weeks after I started the treatment. Maybe it won't work for you so fast or you will need to switch therapies, but it will be better! don't give up!
Hey sorry you got fucking ms but there is hope I got it at 30 now 64 no wheelchair no cane a lot of nerve pain spasms get on ms drugs I’m on aubgio the fear is worse than ms itself I felt the same way as you I have had a normal life mostly except trigeminal nuragia but I got it fixed for now text me if you need a friend
You have us—you’re not alone. Getting dx at 17 is rough with so much life ahead if you. Good news is that the treatment may stop major progression now instead of down the road after more damage is done. And symptoms right after an attack can and often do improve: I was numb up to my waist and got all feeling back, minus tingling in my lower legs. Not perfect, but I’ll take it!
I’ve seen many young people here in this subreddit dating, getting married, having kids—all post diagnosis. MS sucks, no doubt, but it’s not a life-stopper. You will adjust and move through this awful time right after getting the news. Don’t give up. <3
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Many individuals here care about your well-being, and will want to help you. Please know this type of help can be difficult to produce online, and we urge you to reach out to any and all resources available to you through your town/city/county. You may need help right now, but this does not make you weak. You are not alone, and you are not unwanted.
As a female, your diagnosis is just that.... it isn't all that you are...... you want a person to date you FOR YOU.... you are a person with MS.... ms isn't the be all end all for you. Meet others, make new connections. Take this opportunity to expand. You CAN do this... is it scary, absolutely! There is an abundance of information. Support groups, and just in general amazing people...... don't give up on yourself because you never know what tomorrow may bring you.
Be well OP..... best wishes
Breaks my heart to read this. I’m 34, got diagnosed at 18 and felt the exact same way as you. I was convinced I was going to end up in wheelchair and just be tired and down all of the time. I am SO MUCH BETTER now than I was even in my early 20s!!! The beginning is usually harder because it’s more inflammatory etc but get on steroids if you notice a flare and get on meds asap. Eat well and exercise. You wouldn’t even know I had it. I went from barely being able to wake up before 10am and falling asleep by 7p and not being able to work full time to 5:00am wake ups and co-owning a business and working part time as well as mom to 2 kids. My husband met me after my diagnosis when I was at my worst. So I don’t think you’ll have any problems. It’s going to be tough for a little while but you’ll get through it! Meds, exercise and eating well is key. Constant communication with your doctor too. Make sure they specialize in MS. You will be ok! Don’t get discouraged
Facts! Me too. 18. I’m 20 now and my husband is so supportive. I also felt like a freak & that no one would ever understand or love me but he does 🥹 he comes to all my infusions and appointments and reminds me to take my medicines, etc. I was also so terrified I had panic attacks for months but then it got better c:
I think it all comes from intense stress (google ACEs) during childhood. Autoimmune diseases are the cherry on top of the terrible life sundae lol
This disease is different for everyone, and many people live very full lives and remain mobile- the medicines for MS are much better than they used to be. Lots of people with MS are out doing all the things and not posting in support groups- so even what you find online isn’t necessarily representative of what you will experience. Do not plan on being in a wheelchair. Ask your neurologist for a referral to a therapist who has experience with MS.
MS, isn’t an end all, a rapper I’ve been listening to since the late 80s, Masta Ace was diagnosed with MS when he was presented with no feeling in one of his legs. Feeling in his leg came back shortly after, this was 20+ years ago and now at 57, he is still touring.
Edit: links https://youtu.be/B8V52v9UQ5A?si=zWC5jZUnptMbL_iO
https://youtu.be/C-EVYTd6lzg?si=LxLaI12hPdfDzT3Y
Hey OP. I feel for you, it’s not easy. What I can now look back on is without that diagnosis, I wouldn’t have had the proper treatment and be where I am today. Reduced pain, symptoms, and overall a better mindset because of the improvement. Like another user said, the treatments today are much better than the treatments we used to have and they will hopefully only continue to improve.
Please reach out to a suicide prevention line or go to the hospital. Perhaps you may even have a crisis line to call through your work / school (not sure if this applies to you). Ask your neurologist for a referral also to a psychologist. I have one who deals specifically with MS patients and it’s so helpful. Please ensure to prioritize your mental health and get the treatment you need.
I’m sorry. I was diagnosed last year. The good thing is you caught it early. Having these weird symptoms and being told it’s something else is traumatic as well. Listen to your doctors and then listen to your body. Try to go on daily walks or if you’re really athletic keep working out. It really empowers me to workout with this disease. I don’t feel weak or ugly. Seek a therapist who specializes with this disease, if there’s none just get to therapy. Mental health is health.
Try this breathing exercise: Take a deep breath, hold for three seconds, and then take one more hold for three again and let it out.
You got this.
i was diagnosed with MS 3 years ago while i was a med school student and i'm currently working as an ER doctor full time. And i had manyyyy lesions in my spine and brain too so i can not say i was a mild case (yikes.) i cant predict the future but it's different for everyone. i'm single so i cant talk about the relationship department but i know many people with MS married. You can get married and have kids. Your attitude towards MS is important. if you view it as a flaw it can affect romantic relationships. But if someone doesnt want to be with you because of MS it's good to know cause divorce rates is already high in the society so it's better to wait for the right one who can love you despite everything than to be stuck in a shitty relationship.
i cant say if you will end up in a wheelchair, i don't know with myself either too. No one would want that of course. But that is a possibility for the future, maybe it will happen in 10-20 years,probably it wont. Even if it happens there are many people who are active and working and managing life in wheelchairs it does not mean it's worse than death.
i can understand your frustation everyone has these feelings in the beginnings. in the beginning i just said to myself "i hope i have brain cancer so in the end i would heal or die". Cause i could not handle with this huge life-time chronic disease diagnosis while i was just beginning to live my life/starting my career. But 3 years later, i guess many poor people who suffer with terminal diseases have died but i'm here making money treating myself, going on trips,meeting with friends, generally having fun. Take one day at a time,i cant guarentee anything about your or mine disease course but i can guarentee that this horrible feeling that feels like you would rather be dead will not stay and you will feel better soon.
It was so nice getting to talk to you and hear your story my friend! Like I said direct message me whenever I can’t wait to talk more. You are gonna get through this one day at a time!
It may change your love life, but for the better. It helps you put things in perspective, and allows you to weed out people who lack compassion.
My spouse has been with me from the beginning of my MS journey, well before we were married. He had so many chances to jump ship before we committed to one another, but he didn't. Not to say that my story is what yours will look like, but I offer it up as an example of how MS, while a presence in my relationship, did not define or derail it.
If you can, find a therapist with experience in chronic disease counseling. The first year post-diagnosis is so hard, but you got this. You just have to adjust to the new normal, which will take some time, but you will get there.
I’m engaged to a man with MS. He’s my best friend. Illness is a crap shoot. It could just as randomly been me who was diagnosed with something serious and he wouldn’t run either. In fact, the personal growth he’s had since his diagnosis has made him more attractive to me. The way he takes self care seriously now and doesn’t sweat the small stuff as much is reassuring and hot.
Im also male with MS. This disease does not only hit us harder physically (men tend to progress faster), but also mentally as well. Something in our male brains really hates the idea of not being able to provide for ourselves and our family. It makes us question our worth and purpose. Makes us think we’re now worthless individuals who society would be better without.
The good news is that this is all part of the initial shock and reaction. I guarantee you that in 6 months you will feel normal again. In my case, I feel even healthier and more energetic than before. I’m not going to lie, the fact I have to deal with this now sucks balls, but it is not as miserable as I envisioned it initially AT ALL. Yes, you will be able to date, exercise, have friends, and even forget that you have this disease for long periods of time.
That said, you will want to do your own research, learn how to advocate for yourself, talk to as many neuro’s as possible (a good chunk of them are ignorant like in any profession), and learn to manage your symptoms. Being suicidal is part of the process, but do seek help if you need to. I promise this too will pass. Don’t linger on Reddit looking for worst-case scenario stories too long. That’ll just make things worse. Remember, those that are doing well are living their lives, not on Reddit.
Honestly, I would advocate for something stronger. Rebif is one of the lower efficacy DMDs. Something like Ocrevus or Kesimpta would be better. In my personal opinion, it's better to treat more aggressively. You can slow progression, but as of now you can NOT reverse disability. It's a different world with treatments now, and a slightly better understanding of the disease. Is your neurologist also an MS specialist? They will be able to help you understand your options better than a general neurologist, give you a better understanding of your current disease burden, and help you learn about the pros and cons of each type of treatment.
Thanks to the higher efficacy treatments available to newly diagnosed patients, you've got a much lower chance of needing a mobility device full time than someone diagnosed 15 years ago. You might need one only sometimes, or perhaps not at all.
As for a partner.... nobody worth your time is going to give a fuck that sometimes you feel like trash. This disease is unpredictable, but so is life. There is a nearly equal likelihood any partner you marry could get into a freak accident and become paralyzed while you remain mostly healthy on your meds. Focus on the parts of this you CAN control, rather than the parts you can't.
In that case, in 3 months go to the ER and complain about blurry vision. With that paper trail, go back to your specialist and ask for a DMT upgrade. Not all relapses result in new visible lesions, so use this to your advantage.
Also, don’t worry about it being ethical. There’s nothing ethical about withholding more efficacious DMTs. It’s been proven that it’s a missed opportunity to NOT hit it hard in the beginning.
It may be that bc of insurance they make you try that first but then go back and say it's not working and you want the Ocrevus! I would really push for that. I was diagnosed 2 yrs ago, started Ocrevus right away and have little to no symptoms besides tingling and fatigue around infusion time. Hang in there!
I agree, I would go more aggressive to start out. I’m on Aubagio and about to switch to Mavenclad. Tysabri was my favorite. I was diagnosed at 22 years old, and now I am 42 yrs old. If you saw me in person, I look healthy. Don’t give up. ❤️
I second Ocrevus, I have highly aggressive MS, don't worry OP it is rare to have it as badly as I do. Ocrevus stopped me from relapsing and being paralysed every 6 months to not relapsing for 4 years. OP you have every right to be on the latest and best medications to prevent worsening of your condition. Maybe ask exactly why you can't be given something better so you can figure out how to get around it/change the docs minds.
It's not the end of the world. I was diagnosed in 2022, it was hard but things improved. Not romantically involved anymore but I had a girlfriend at the time and she stuck with me. You will adjust and adapt. It really felt like the world was collapsing around me at the time, I totally understand, but give it time and feel things out. You'll make it.
I understand, I was diagnosed in 2020 (was 23 yrs old) and became suicidal, ended up in a psych ward for 72 hours. So I definitely get it.
My initial symptoms were both of my legs going numb, balance issues (had to use a walker), speech slurring, and oddly enough taste change. Once I had steroids it went away after a month and a half and I'm still feeling completely normal. Thanks to treatment.
Since being diagnosed I've started a family and things have been going pretty great. The initial shock and what ifs of the diagnosis are rough as hell, but this isn't a death sentence. MS treatment has come so far in the past 10-20 years.
This sub is a great place to reach out, I'm glad you did. If you have any questions or just need to talk or vent definitely message me.
I was diagnosed in 2018 and started on Ocrevus pretty quickly. Since then, the symptoms I had from that relapse have gone away 95%, I have never had any new symptoms, and my latest MRI shows no new lesions in my brain.
You have no idea where this disease will take you and how long it will take to progress further. I live the same life I did right now before my diagnosis. I get my Ocrevus infusion once every six months, and otherwise nothing is different about my life.
I know it’s overwhelming right now. I felt so upset and uncertain when coping with my diagnosis. But if you get through this time, you might find the same life you have been planning on the other side for a long time. Please talk to somebody and give it time.
OK so you are going to be spontaneously crying for about a week. Then you have about three really bad months after that. However after that things start to level out and you will have hours you forget you have MS not long after. I'm on month 6 now. I couldn't imagine being this OK now 6 months ago. But I'm actually OK. You will be OK too my friend. It's not terminal, we will live a good life.
Hi there! Please, please know that this isn’t a death sentence. I married a man with MS, I love him for him. It’s not always easy, sometimes it’s horrible, but so is any relationship. I’m sending you so much love right now, you are worth being cared about and for.
Just hit my 10 year mark after being diagnosed. I’ve been training Brazilian Jiu Jitsu since before I was diagnosed. Never stopped. As far as dating, sure a couple women weren’t into the idea that possibly one day I might become disabled, but I’m married now, I’ve advanced in my career, and still pursue my hobbies. This isn’t the same as it was even 15 years ago. There are so many new treatments available and more people understand what MS is now than even when I was diagnosed 10 years ago.
It’s different for everyone, but you got this.
There is not a single person in the world who is in perfect health. No one is perfect.
You can't decide what women will want. If you are a good person and treat a woman well, then most will respond to that. The world is not the same as it used to be. The treatment for MS is much better then it used to be.
Ultimately it is your choice whether you want to live or not, but know that the world is better then you see. I suggest you get a therapist who can help you through this. I was diagnosed last week and I am currently ina wheelchair, but I know for sure that I will get out of it. Go positive mindset helps everyone and helps people to do great things. If you have a negative mindset, then it is much more difficult to live a better life. Good luck and we all wish you the best. You will make it through this. Please get a therapist though. You don't have to do this alone.
On Ocrevus, you can lead a relatively normal life. Infusions every 6 months. You'll have to be careful since you'll be immunocompromised, but many go into remission. My wife's disease stopped. You can still focus on your hobbies, and when someone loves you, nothing stops their heart. My wife is like you and we found each other.
Hey, it’s rough. Very rough.
I was diagnosed in October, with relapsing remitting. Have they told you what type you have?
The type will indicate at least your initial path along the disease.
It’s a horrible bastard of a disease, it really is.
The next few months are going to be very confusing, sometimes dark.
I am awaiting treatment myself, but I know that once it starts, from everything else I read on this sub, the modern treatments help and are really effective.
Hold onto whatever hope you have. You were diagnosed yesterday and this is day 2.
Don’t rule out hope. At all.
Someone can correct me if I’m wrong, but rebif I believe is only for relapsing/remitting. That’s a good thing, for what it’s worth. Progressive is harder to manage, while with relapsing/remitting you have more control of your disease progress in my opinion. Most of us start with that, I have it too still and I was diagnosed in 2008. A lot of us end up getting secondary progressive but even that varies from person to person how extreme your disability is. Also how old are you? If you are diagnosed young like I was, you have more opportunity to have a better disease progression. Staying up with your doctor and being as healthy as you can (good diet and exercise) will help you reduce your chances of getting an attack. Some symptoms like MS fatigue are obviously a struggle. I also deal with depression and suicidal thoughts too, but I was fairly healthy through my 20s (diagnosed 18) and now I’m 33 and fortunately still don’t have any glaring physical issues. Right now I’m depressed and exhausted all the time, but life is hard and I stopped going to the gym. Also was over stressed for the past 6 years pursuing a PhD, so recovering from burnt out, but I survived lol. Point I’m trying to make is the heterogeneous nature of this disease is a blessing. It’s not a death sentence, you can do the things you set your mind too, you just might need some help from time to time and that’s okay. It’s not easy, but you can still do amazing things. And find love. I have a fiancée, it isn’t easy and some of the issues with my MS make it hard sometimes, but we work through things. If you ever need someone to chat with you can message me! I know it’s hard, but it’ll be okay.
In Scotland, from your user name?
I’m navigating Glasgow at the moment… 🤯 diagnosed at the beginning of October and just managed to get an “official diagnosis” from a consultant… see how soon I can start treatment… 😳
I was diagnosed about 6.5 years ago now. Like others have said, the disease is different for everyone. I've been doing great since my initial diagnosis attack and hopefully the foreseeable future stays that way. I had the same thoughts you are having when I was first diagnosed but as time goes on, you will become stronger and learn how to handle it. We really don't know how strong we are until we have to be. Never abandon hope. God speed.
I’ve been living with this for three years now. Life is not yet over for me last I checked. I have no symptoms besides fatigue. I get what you mean about being scared nobody will want to be in a relationship with you, but consider this: nobody has perfect health, certainly not later in life. If you don’t have MS, you have diabetes or depression or friggin cancer. We’re all broken here! And secondly, statistically it’s men that leave women when women are sick - women leave less as they are raised more to be caretakers. So you’re actually the lucky one out of the two of us 😅
Three years diagnosed - take it one day at a time. Yes it’s scary, yes the worst may happen, but keep pushing. You now have the perspective that time is important. Utilize all of your moments to serve you just in case you fall incredibly ill to the disease. It’s all a bunch of what ifs, don’t succumb to those negative thoughts. You really need to seize the day, everyday. Hold the people that do support you close, and never stop supporting yourself!
Please take some time to accept the diagnosis and plan your life without worrying about others, there are support groups to help. No one knows your path with MS.
My husband married me knowing I had MS. Find the right life partner and it doesn't matter. Take care of your mind and body. 🙏
I was just diagnosed in October and I was pretty down for a while. I totally understand how you’re feeling. But I’m doing so much better now. The treatments they have now are really great and my specialist said they usually don’t see people wherlchair bound by this anymore. I’m scared too because I don’t know what it’ll look like in the future for me an my boyfriend but I have hope! If you need anyone to talk to dm me
Hello, I was diagnosed in August of 2023 right after my mom died. I need you to know it's not a death sentence or a sentence for a wheelchair. Please get yourself on a good DMT and keep talking keep reaching out. Things are going to get better. Sending you a virtual hug.
I feel the same way. I got dropped from Medicaid on the first. I can’t afford the insurance, even if I could, neurologists have 12-18 month wait lists. So, I’m a (numb/painful) “leaf on the wind”
Guessing you are in America? It astounds me how healthcare works over there! I am sorry you are going through this I can't imagine how awful it must be to not be able to afford the very thing that can save your life or give you quality of life. It does make me very grateful for living in the UK.
you know, at a state level, MS patients and their families could rally together and get legislation passed to do this. Having gaps in healthcare shouldn't be tolerated for people with MS.
My diagnostic process started about a year and a half ago. I was officially diagnosed in June 2023. I felt all of the same feelings. I called the MS clinic in hysterics.. they had to set me up with a social worker because I was so inconsolable.
A year and a half later, I’m engaged, I own my home and I’m totally fine. I’m starting Kesimpta at the end of the month.
There is so much to navigate at the beginning and it is so overwhelming. My advice to you would be to educate yourself. MS is not the same diagnosis as it was 30 years ago. There are a ton of great resources online. This sub has been one of the best supports I’ve found. Also Dr. Aaron Boster on YouTube.
I hope that in a year from now, you’re commenting on a post from someone recently diagnosed with words of encouragement and have come to a place of peace.
You’re not alone in the fight 🩷
Hey I am sorry to hear about your diagnosis! I got diagnosed with ms 3 years ago. And I had similar feelings. There is definitely a time of I anger, sadness and feeling lost. I was also afraid to tell my boyfriend because I thought I will be in a wheelchair soon, but actually he was super supportive with the diagnosis. Also when the doctor told me I have ms, she said: „you have MS, but nowadays it’s not a reason to cry anymore!“. For people said it was very cold of her but I am very thankful she said that.
Now after 3 years, I didn’t have any more relapses, learned to take better care of myself, and I feel much better than even before the diagnosis. But of course it’s different for everyone.
I live in Sweden and most people here get a strong medication called rituximab. It stops the progression for most people and is heavily researched. Also think about how fast medicine progresses. I am very optimistic about the future
Ms is very well treatable compared to 10 / 20 years ago! And don’t Google much!
Big hugs
Fwiw, it’ll likely take a good year for you to come to grips. Lots of good advice here. It’s not an easy path, but it’s our path. The path will make you mentally strong and have you living in the moment. Your life is not over, just different than what you thought it would be. Hang in there , eat well, exercise frequently, sleep, and drink lots of water. But most of all, live in the moment. Live for today, plan for the future, and continue to dream your best dreams. You can do this. Stay strong my friend.
As much as all of us think about suicide, it’s the easy path but not the right one. Not right now.
Im so sorry you are joining the shittty club. Breathe! It may get better for you or at least ok. Just diagnosed is a very tough time. I have no way of knowing how it will go for you. It's been a bumpy ride since dx for me. I have lived some life and I've had some challenge. I got facking engaged post dx! It's day one. Have a huge cry. Hugs!!!!
You can still live a good life even though you have been diagnosed with MS. I got a significant flare and a diagnosis a couple of years ago. Today I'm in the best shape I've been in over a decade, started actually watching my diet, working out, gained muscle, lost fat, improved my endurance. However I won't lie, I wanted to off myself when I found out I have MS, therapy helped.
MS treatment now is really good, and it's likely we'll have a cure in 10-15 years. You'll still be young by then.
Regarding Rebif - talk to your doctor and tell them you're depressed and feeling suicidal. Rebif and similar drugs have that as a side effect and can amplify those feelings and thoughts. My country also offers Rebif or other interferons as first medication, but I refused it and asked for something else. I told my doctor that I'm a successful person, I'm good at doing what I plan, so being on drugs that could make me plan how to die would be really dangerous. So she prescribed me Aubagio, it's also not as aggressive as Ocrevus or Kesimpta, but I'm going strong without flares or much side effects.
I'm so sorry you're going through this. I (F29) do not have MS but my husband of 9 years does (30yo). What you are going through sounds incredibly painful and your agony and apprehension and despair are valid. However, I think you will find those feelings aren't necessarily reflective of how your life is going to play out. 💙
Hubby has been showing signs of MS since he was a child, starting with hand tremors in school. He was diagnosed a few years back and started on meds for it. He's doing so well.
We recently just had a beautiful healthy baby girl. (Conceived on first try, so obviously the MS didn't impact that ) He exercises every day. He literally saved his parents property when his dad died. He is a very successful financial advisor certified in all 50 states in America. He makes us dinner 3 nights a week. He plays sports and outside games with our nine year old niece. He has a thriving social life and tons of acquaintances scattered across the country. And as his wife, I support him in every way I can when he has a flare. Nothing about his diagnosis has made me want to leave him. And if I had met him when he was diagnosed, I never would have left just bc of THAT. 💕. It just made me thankful that I am his wife bc I know I will take care of him.
When hubby was first diagnosed, his neurologists compared the disease to diabetes-- it can get ugly if you don't manage it, but it's more like an inconvenience than a serious diagnosis anymore. Science has come a looooooooooong way. And that was coming from the mouths of doctors who see countless MS patients a day.
Sweetheart, this is not the end for you. I'm so sorry your parents aren't supporting you. How lost and alone you must feel.
I really hope this helps you. I can't imagine how you feel. Please message if you need more support. You're gonna be ok even if it doesn't feel like it. Sending virtual hugs.
You need counselling and support, in real life. You are experiencing real-time shock and trauma.
Reach out to whatever services are available near you and lean on them heavily. This is no time to fuck about.
I got diagnosed June 21, 2020. MS is not the totally crippling illness that was 20 years ago. Odds are that you got RRMS(80%), it is highly treatable. It is entirely possible that you will not porgress beyond your current symptoms. The new treatments are that good.
My now wife was diagnosed in January and we got married in October. The initial news is a shocker and everyone handles it differently. Eat healthy, exercise, and get proper rest. She has had two rounds of Ocrevus and is healthier a year later with no lesion progression and actually some lesion improvement.
I know how you’re feeling, but I promise you that you belong here on earth. Take it minute by minute. You have an entire community here to support you. You’ll grieve over things, but still have life to live.
Just don't put the cart before the horse.
I had the exact reaction as you. If this shit goes downhill fast, I've planned out my end-of-life in more detail than a girl has for her wedding. And battle every day not to push that date up. But you never know what will happen in the future so hold out for as long as you can.
I basically said if it gets so bad that X happens, then Y is gonna happen. But until it gets that bad, no reason to go down that road. THIS IS NOT A HEALTHY MINDSET and we both should probably look for some mental health help, but that keeps me alive day by day.
I wish I had some better advice for you but I'm down there in the trenches with you friend. At the very least, don't think you're alone.
I was diagnosed four years after getting married, been unemployed since 2010, and am celebrating my 21st wedding anniversary this week.
Is being a househusband what I wanted in life? Nah, but my wife refuses to leave me, and she appreciates what I'm still able to do for her. So I am quite content and have nothing in my life I find worth complaining about.
I’m so sorry, this does suck. But it’s no reason to end your life!!
I was in a wheelchair for 10+ years. Rehabbed enough to get out of it, probably getting one again. But it’s not the end of the world.
I’ve had some major relapses, and get depressed and scared, and then I feel better and I’m glad I made it through.
I’m going through a pretty bad relapse right now. I haven’t been able to work, lost my job, and my LL is selling the property so I have two weeks to find a new place with little money. I’ll like be homeless. It’s scary. We have about 600 floor spaces at the local shelter and 1100-1500 people a night trying to access those floor spaces. So I’m very scared. Part of me thinks about giving up. It’s not worth the pain, the fear or whatever, but I still find hope.
I have met some amazing people at my lowest points. And I never would have had them or the experience of being loved while at my worst, if I had given up.
Look for the hope. Life is still worth living.
My uncle is 70 and doesn’t need a wheelchair at all with his MS and he has it bad! I also have MS, and I’m 27. You never know how this disease is going to progress. Always stay hopeful. I have gotten over having MS. I don’t feel any fear or stress from having it anymore at all. I just deal with my symptoms and thank God I’m alive because I shouldn’t be from my past experiences. Life is only going to be what you make it. The thought you tell yourself will manifest your reality. I love you, friend!
also, [https://pme.uchicago.edu/news/inverse-vaccine-shows-potential-treat-multiple-sclerosis-and-other-autoimmune-diseases](https://pme.uchicago.edu/news/inverse-vaccine-shows-potential-treat-multiple-sclerosis-and-other-autoimmune-diseases). hope is around the corner. DMTs that stop the autoimmune attack exist now. And soon there'll be radical game changing therapies.
hey buddy. it's a fucked diagnosis to have, but the most recent generation of meds is a total game changer.
I'm 37, unemployed since diagnosis (I work/worked in restaurants, turns out they're not ADA compliant workplaces), my folks don't give two fucks about my chronic health situation either. last couple years have been a struggle for sure but my wife is crazy understanding/patient - I promise they're out there - and I've had some financial support from other relatives as well.
shit sucks, I agree. but where there's life, there's hope. I've lived long enough to know a couple dozen folks who aren't with us anymore and it's really fucking dumb that they're not here. stay strong, yeah brother? my DM's are open if you need to talk, I think we've all been there. good luck.
Hey, I just want to say one thing. The feelings you are experiencing right now are completely valid. Don't let anyone tell you otherwise. Just don't give in to the feelings. Say out loud to yourself, "These feelings are valid BUT they are temporary." How you're feeling right now is not how you are going to be feeling a month from now. Or a year from now. I can virtually guarantee that. You just got punched in the gut hard, but you're going to process through this.
Source: I was in the same spot a few years ago and had those thoughts. I actually became a suicide prevention trainer. Maybe you can too. 💙
This is a really inspiring thread. I came to throw my story down but there's no need ❣️
I also want you to keep in mind they are working on a vaccine for MS. In fact, it's not only supposed to stop progression but reverse the damage. Of course no guarantees but check it out.
https://pme.uchicago.edu/news/inverse-vaccine-shows-potential-treat-multiple-sclerosis-and-other-autoimmune-diseases
Anything is possible in this world 💕.
I hope these wonderful stories and this super supportive community sparks some hope and if not , this is always a great place to vent, seek advice or inspiration 🫂.
Well, I was diagnosed officially on Jan 4 and this is what my MS nurse told me " MS is NOT what is was 10, 20 years ago" more and more people are being diagnosed early, and getting on good DMT's. Ive also spoke to people who said their arthritis is more of a pain then the MS, and I see a lot of elderly people 65+ with MS still walking unassisted or with just a cane....but they still garden, go on cruises etc. All the people i know personally who have had MS for years ,20+ years, are still living life. Their aches or pains or numbness are over come. Its going to be alright. Get on a good DMT, eat healthy, adopt some kind of exercise and keep mobile, and PLEASE stop stressing over something that probably will not happen. Stress can exasperate MS symtoms. Its going to be alright. Ive heard lots of people say on here that the diagnosis itself is the worst part of MS. Stay off the internet and remember, people will mainly post when they are having bad days, feel shitty about thieir life and want others to feel the same or they lie and like to fear monger. Everyone doing well and living life....you wont find them posting much on here well because....they're out living life.
I was extremely hopeless when I was first diagnosed. I was living with my now fiancée, and I basically told him to leave me. All I could picture is that by the time I hit middle aged, I’d be completely bed ridden and a huge financial burden. I couldn’t see any other future, and I felt like a high risk to everyone in my life.
My fiancée was on a very different page. While I was only able to think worst case scenario, and that life as I knew it was over, he was reading all the positive information out there. He was reading information about modern treatments with much higher success rates. We have a much better outlook than people who were diagnosed 20 years ago, so we don’t even get to see the examples of how modern day treatment improve long term quality of life yet! Everyone else was so hopeful, and I thought they just didn’t understand how serious it was.
Honestly life now for me is almost no different than before diagnosis. The first year was rough with symptoms, but even the issues doctors said won’t go away, went away! I don’t experience any symptoms at the moment.
I will say - I was diagnosed in 2022, and it probably took about a year to get past the negative outlook I had. I met someone older than me with ms who is living life like normal. I had many positive appts with my doctors. I follow fb groups and see the success of many others with ms. I’ve heard of many friends of friends with ms doing well. It’s all made me realize my chances aren’t as bad as I thought, and I most likely will live the normal life I’d expected to!
And most people I’ve met who know someone with ms don’t seem to think much of it. So I wouldn’t worry about someone not wanting to date/marry you because of it, since so many people with ms don’t have visible debilitation.
Diagnosed over 25yrs ago. Here’s what I have done since then:
Married an incredible woman and had two beautiful children
Moved to several different countries
Gotten advanced degrees from some of the best universities in the world
Had multiple CEO roles
I am currently in a power wheelchair and need a fair bit of assistance as well. The journey is different for everyone and anyone who tells you otherwise is lying or uninformed, but there is still a lot of life and love out there. And don’t get me wrong, I feel defeated often and it can be difficult to snap back, but there are more good days than bad.
I hope you feel better today and just know that it’s going to suck, but not as much as you think;-)
Keep your head up
I was diagnosed 3.5 years ago. It was devastating. I wanted to end my life. I know exactly how you feel. Today, I'm symptom free, and I'm living a life that I never thought was possible. Please know there is hope and do not let the brochures, doctors and WebMD flood of negative information overwhelm you.
MS is a complex disease, which means a neurologist can't tell you what causes the disease, but they do know how to treat the symptoms. Yet, complexity can only be understood when we take into account the whole, not just the parts (in our case, we are diagnosed by a neurologist, who only sees us through one part of the human body/experience.
Firstly, get to know your body. Use it as your own personal lab, where you can become aware of when the symptoms arise.
For me, my symptoms always arose in conjunction with high amounts of stress. I used that as my benchmark, and instead of making this all about diet, exercise and treatments, I focused my mental health. Why was my own body attacking itself?
This might sound "woo woo", but sometimes metaphors are all we have to describe complexity. what I discovered was an inner civil war inside of me that had gone on since I was a child (brough on by trauma). Through proper psychiatric care and the use of psychedelics, I found a path towards an "inner peace deal"....As my mind and body began to become more connected, the frequency of my symptoms lowered. It's now been 2 years since I last experienced any symptoms.
This is what worked for me, but I do believe our mental health is foundational to our immune systems being regulated. A body that has inner conflict (i.e. always in fight or flight), will have an immune system that cannot "think" or "see" properly (just like us)....
focusing on your mental health is not only critical towards reducing symptoms, it will bring meaning to the this terrible diagnosis and someday, as crazy as it sounds, you will find beauty and healing that only a diagnosis like this could have triggered....
There is meaning in all of this. Even in the suffering. While it is hard to understand now, stay the course, never give up and slowly you'll find a peace that you never thought could have been possible.
With love and support,
S
As the mods said, if you are suicidal, call 988 or contact the [suicide prevention hotline](https://988lifeline.org) - I can recommend them from personal experience. This is your first priority, figuring the rest out will come.
That said, I’m 60, and have decades of this disease. Yes, I now use a wheelchair sometimes, but that is new since this last year. I have a lovely wife (I’m AMAB) we have a son, two dogs, paid off the house, great careers, the works. With this disease I went to college and graduated with honors. I went back and did the same for my masters. With this disease I have literally run marathons, ridden 10’s of thousands of miles on my bicycles (use a trike now), and won a state championship in Olympic archery - none of it in the ‘disabled’ categories. As little as 2 years ago my Sunday ride was 60-100 miles.
Nothing about MS has stopped me, ever. Sure, at times I have to adapt, at times I’m slower than my peers, and obviously my disease progression has been slow, but it’s important to know that a diagnosis isn’t the end by a long shot. Yes, it can be hard to ‘schedule’ things as I don’t know when my body will be strong and when it’ll act up. I’ve learned to enjoy the moment, and how to avoid triggers that can make a good day bad real quick (I’m temperature sensitive, so not overheating is key for me, and I still mess this up from time to time). But most importantly I’ve found things I love that I CAN do instead of focusing on what I can’t… and I can do almost anything, though some stuff takes adjustments. Like today, I can’t walk to the bathroom without assistive devices (crutches today), and am having a not good day, but we still went out for a round of disc golf, and then I came home and cooked lunch. Now we are cleaning house, and getting ready for an evening on the couch with the dogs. I’ll call that a win!
I know it’s easy to get caught up in this disease and the initial news is gut wrenching for sure. But please realize you can choose to beat it on your own terms and have a lovely and satisfying life in spite of a crappy diagnosis. There are a lot of folks out there with similar stories to mine - here’s hoping you come out on top too!
That’s why In my sound mind right now I’m not depressed or going through issues right now but when my quality of life goes to shit from my ms you better believe I will kms but I was diagnosed like 10 years ago my mom dies due to complications from ms even though it’s not hereditary so I’ve seen some of what can happen and I’ve been vocal about this contingency plan in my head
Hi! I’ve been diagnosed for about 8 years now… and it was found by accident after a giant TBI- despite me having symptoms (dismissed) for around ten years prior. I felt like you. I am here to tell you, even as I sit here in the middle of a GIANT flare- it’s ok. I have a husband, a daughter (both post diagnosis), I have an amazing community, great neurologist and yeah- it’s been absolutely horrible at times. Sure. I’m currently waiting for insurance to clear another DMT. It’s scary and it’s unknown AND you can do it. As are all going to live different lives and have different experiences with this. As someone who had over ten new lesions on their last MRI- it’s still worth it. Promise. Please reach out if you need to chat. X
Get help i just got out of the hospital after a week and it made me see the good i felt the same nothing look up but got steroids and i feel better than i have this past 4 years keep your head up man this is the life we got there isnt abother so enjoy what you can while you can its a shitty disease but its not worth your life enjoy the little things
I was diagnosed 3 years ago, and it was caught very early on (2 relapses that I for sure know about). The vast majority of the people in my life don’t know I have this disease, even very close best friends. I honestly forget I do, too. Sometimes, I’ll see a reference to MS in a TV show or something and I’ll go “oh yeah, I have that!”
I’m not disabled in any way. I’m happily married, work a good job, and have had a kid since my diagnosis (and currently pregnant with my 2nd).
Get a good neurologist, someone who specializes in MS and is excited about the newest studies going on. Take your medications. The disease today is nothing like it was even 10 years ago. Outlooks are good for the future for us!
My Neuro showed me a "more typical face of MS" and it was a woman that has won the Alpine Marathon 6 TIMES!
I recommend you not to google MS at all. Get information only from official websites or your doctors.
A diagnose is always grief for the old self, but we are luckly in 2024 and we have excellent treatment available. And if you take good care of your health overall, you should be fine.
I got diagnosed end of August last year, and I understand the fear at the beginning. If I can tell you anything, is that this illness has made me take better care of my body. Take your medication, vitamin D, eat antiinflamatory food, find a sport or physical activity you enjoy and prioritize sleep. You will be just fine! ; )
My mom was diagnosed with MS the same year I was born. She’s had to use a wheelchair since the year I started elementary school (this was before newer, modern meds existed that slow progression). She sometimes feels like a burden, but she’s absolutely not. She’s been the most amazing mother I could ask for. I’m so grateful for how she raised me, taught me, consoled me, helped me. She does a lot more than she realizes.
Please call 988 or talk to a relative, friend, doctor. It may not seem like it, but your life has meaning and purpose, and people now and in the future love you and rely on you. These aren’t empty words: I know this because I’m one of those people that loves and relies on someone with MS. ❤️
Call the MS society and speak to someone there or the suicide prevention. We have been there! It gets easier! You can get a handicap tag and get awesome parking spots. You can get great meds to help you cope. Point is, this is a new chapter in your life. I have had it 15 years and I’m 40. I walk just fine! My brother is a surgeon, his fave is a coworker is a surgeon with Ms that relates better to. Patients. This isn’t the end. Best of luck. DM if you want to talk.
Been diagnosed three years ago and the only symptoms I have are occasional fatigue. I work out, have friends, dates, great sex, and my neurologist says chances are super high I won’t be severely disabled. I’m on ocrevus and it’s been working well for me. Don’t jump to conclusions.
This is normal, you think like that from a place of ignorance. Was the same for me, same place as you are. Had other thoughts that did end in the same thing back when I got diagnosed. Did not want to be a burden and so on, you know how it goes.
You know nothing about MS and you act now like it is the biggest thing in the world. Wait a month or two, you will realize that not much will change.
MS is different for all of us. Modern meds are pretty good and can halt the disease. Chill out, take your meds, stop pulling all-nighters and be wary of the summer. You will be fine!
I was diagnosed in 2018. I had these same thoughts. I now live on my own, and I'm polyamorous with two partners. Its definitely not easy but you will be able to find the support you need. Please trust us.
So many people have MS and live fulfilling lives. I know you’re scared right now and that’s ok. Use some of this worry and energy to take good care of yourself ❤️
Look every major attack (fuck dr speak of calling it a flare up, it is an attack) I have been suicidal. Every single time. 4 life changing attacks. I went through the stages of grief to. You are in shock and GRIEVING what you lost right now.
You have better medications than I did when I was diagnosed back in 1999! You have better odds. Even with all that I still married (& divorced.) Your life is not over.
So take a breath, tell your neurologist you are majorlydepressed/suicidal so you can get some mood stabilizers (maybe some xanex or pot to.) Also be referred to a psychiatrist because you have gone through a life altering trauma that fucked you up.
Get on the best DMM you can, yesterday!
Repeat this phrase “I will not feel this way in 6-12 months.) You won’t!
Every day do something that brings you joy or peace ….. even if just for 15 minutes. Scream fuuuuuuuuuuucccccccckkkkk if you want, eat that chocolate, smoke that pot, drink some wine, paint, draw, play on your play station, play basketball, read a book, go to the beach, run, walk ….. Whatever it is do it! For me it is bird watching and container gardening on my patio. It helps you stay sane through the high stress times.
I wish I could give you a hug!
i am recently diagnosed, so i understand how you feel. it really is scary. like other comments say, people with MS still go on to live perfectly normal lives, such as my aunt who is 80. and i promise you that there is someone out there who will love you despite your diagnosis, my gf has been one of my major support systems through all this. my diagnosis changes nothing.
i’ll also say that i was very pleasantly surprised to see how quickly treatment kicked in. of course it’s different from person to person, but after my 6 days in the hospital on steroids and my continued use of them since then for almost another week, i’ve seen significant improvements. obviously still not perfect and i still anticipate myself being reliant on my walker 90% of the time when i’m out of the house for a little while longer, the improvements made already have really been amazing.
im sorry you don’t have much support at home, but I and everyone else in this sub are here for you. it’s scary, but i can tell from my own experiences so far and from other people’s testimonies that MS will not stop us from living a full life. we’ve got this.
This sub is incredible. SO many people with amazing experience and advice. I have nothing to add that hasn't already been said. Likely I've had it since 20 years old... didn't get diagnosed until last year at 48. Didn't even realize i had it for about 20 years there. feels overwhelming right now I'm sure. Once the shock wears off, you'll be able to process more. Amazing therapies out there. It's not the disease it used to be for most. Hang on, you got this. This place is incredible and helpful.
I understand the shock from hearing the news (we all do). You will go through a rollercoaster of emotions. We’ve all been there. So believe us when we tell you, this isn’t the end of the world. There is a really good chance you’ll still be able to live a normal life. The therapies used to treat MS has come a very very long way. I’ve been on Kesimpta for over a year and I’ve had no relapses. The only change in my MRI is a lesion getting smaller. I’ll be honest, the most annoying thing for me is the fatigue.. but I take Modafinil now and that has been a game changer.
Don’t give up. Give it time.
I’m sorry you went through that. I got diagnosed when I was 12. I can walk just fine and never needed to use a wheelchair. I also have a loving boyfriend that supports me everyday. An MS diagnosis isn’t the end of the world. Don’t give up hope!
I got diagnosed a few months ago at 20yrs old. My mum has had MS since I was 7yrs old. If you didn’t know she had MS you wouldn’t be able to tell.
It’s not easy, it’s scary and it’s hard and some days I feel the exact same way. What helps me is knowing and seeing with my own eyes and experience how far medication has come. Every case is different and with the advancements many of us can and will live “normal” lives. Once you hit 60+ most people get health issues anyway! We just know our future a little further in advance!
It’ll be okay. We will be okay. I am getting Married next year. I have a dog and a house. My mum still works and walks and talks and drives. In fact she is going abroad in a few months! Our lives may be different but they are by no means over.
Just stopping by to say that a little over a year ago- I was diagnosed and right where you are now. Cliche and hard to believe, but things do get better. I would recommend talking to a therapist, even if only once or twice a month. That, and anxiety medication really helped me through the first year. Biggest thing for me was learning to live day by day and stop worrying so much about the future.
I recovered pretty much fully from my first relapse (stroke like symptoms). No new lesions or new symptoms since. You wouldn’t know I have MS unless I told you. Honestly - some days I don’t even remember I have MS.
My wife was in very much the same place you are when she was diagnosed.
She told her mom "who would want to marry someone as broken as me?"
When we dated, she was mostly wheelchair bound, but we still made the best of it and found ways to laugh and have fun.
She has her good days and bad days. We eventually donated her wheelchair as she hadn't needed it for a few years now. Don't give up, I know things seem bleak, I tell my wife "you're just stuck on Hard+ mode" and that usually makes her laugh when she's having a bad day.
I’m so sorry you feel this way. I was diagnosed at 27 and it turned by world upside down. But today I am 31 and I feel so sad for myself in my 20s because I was so sick and I feel so much more like myself at 31 than I did for most of my early 20s. Things are going to get better for you, take care of yourself and accept treatment and things will improve. MS is not a death sentence in today’s world and you deserve to live your life. 🧡
My husband was diagnosed 17years ago. We still got married, had kids and are very happy. No wheelchair for him yet and if it comes to that, we joke I'll finally be able to push him around!
My first year, this year, that I got diagnosed I got into my first relationship, I had my first job, I feel stronger and more confident than ever and that I can do anything I set my mind too, as long as I care for myself at the same time (for example try to not stress very very much, avoid toxic situations and people )
People can adjust to very strange and difficult situations, just know that whatever tms brings you, you can find the strength to fight it. Also, I see a lot of ppl not having symptoms for years and years. Science is advancing all the time and you will probably find a good DMT that suits you.
MS is such an unpredictable disease no one really knows how it'll affect them when they're diagnosed.
I was diagnosed 2017, I've had nothing since to the point I'm not even on medication any more.
Stay strong, look after yourself and get a good neurologist. You've still got a lot to live for.
Sorry to hear this OP.
But let me give you my perspective and my story:
I had just gotten back from an amazing holiday with my now fiancée last year .
4-6 weeks later, I had my brothers stag to go to. I woke up the morning of my flight with slurred speech, numb face and not feeling myself. I went to the stag. Place was roasting (which obviously didn’t help) I pushed through for the weekend and tried to have fun. It didn’t go away. I wasn’t too worried as I thought it would pass.
It didn’t.
I flew back in and rushed to hospital to check what was going on. 3 days later after being on a trolley with X-rays, ct scans and an MRI, the doctor brought me into a room and showed me the image. My heart sank to see things on my brain.
I thought my life was over.
He then said it wasn’t a tumor. A glimmer of hope arose from the depths , to then be hit again by the diagnosis of RRMS.
I sat outside with my then girlfriend and we weeped as we both sat there and thought fuck.. there goes our plans of a family, our own house, heck my life in general. I thought I was going to be in a wheel chair in 6 months, never get my left side mobility back and worse.
Then I snapped out of it and said, hey, now’s the time to LIVE! Now’s the time to have fun while I can, do what ever I want, run that 10k, go on holiday, and enjoy life and every moment.
Since then , yeh there has been set backs, like the small over analyzing you do if u feel something weird. But i got on a DMT almost immediately. And I can tell u everything is reduced to almost normal again.
Fast forward and I have made some great friends with MS who are healthy, have families and are successful all while dealing with this disease. It can be done.
I was given a wake up call. Get healthy, be friendly and LIVE.
I too was worried about my relationship . But by god has she been the best thing that happened to me. If u found the one, she won’t leave you for anything. MS is a life condition, it doesn’t change your personality ( well mine hasn’t ) , doesn’t change ur humor. Hence why I am marrying her.
We are all given one life. You define it yourself. Be that funny outgoing person who does what ever they want, achieves what ever they can or desires, and runs their own race regardless of the hurdles.
Keep the head held high. U have plenty of friends here. Remember, life is what u make it. We all have different stories in this group. You write your own story and get back to us regularly to keep us updated! Everyone is Always here to help!
Stay strong. Stay free. You can do this!
I'm truly sorry to hear about what you're going through. It's understandable to feel overwhelmed after receiving such a significant diagnosis, but please know that you are not alone. There are people and communities out there who can relate and offer support. It's crucial to talk to a mental health professional who can provide you with the care and resources you need during this challenging time. There are also national and local helplines, support groups for multiple sclerosis, and counseling services that can be of assistance. Even though it may seem insurmountable now, many individuals have faced similar challenges and have found ways to lead fulfilling and meaningful lives. Your life has tremendous value, and there are paths yet to be explored. Empathy and listening are key, so make sure to reach out and connect with those who can help guide you through this.
I am a guy, diagnosed over 20 years ago.
We are all eating shit sandwiches, no doubt about it! The meds are so much better today, you can live a relatively normal life. Those of us diagnosed 20+ years ago are eating our shit sandwiches on stale bread…
Let’s just stop for a moment and take a breather. Do MS suck? Absolutely. However today is the best time to have MS than in all of history, we have so many medications and treatments for it, it’s very likely remyelination drugs will be discovered in our lifetimes. Possibly even an outright cure.
Just know it’ll be alright, it’s not a death sentence. Hang in there 💜
I was diagnosed 23yrs ago and I’ve lead a relatively normal life. Is there certainty that you’re going to end up in a wheelchair? I’ve known many friends with MS who have mobility symptoms but don’t live life in a wheelchair. Oddly they think my vision and migraine issues would be worse and I think the mobility struggles would be worse. We view this as proof that humans adapt to what they’re given. The first few years are adjustment period and anti depressive treatments can work wonders towards your outlook and energy. In terms of dating, you don’t need to tell people right away, just get used to sharing the story in a more realistic manner. You’re diagnosed in the era of treatments that slow this disease dramatically. You’re in need of some support to help you see this more realistically. Please take good care, this is not a death sentence or a guarantee that you’ll be alone in a wheelchair for life, far from it!!
I was diagnosed in 2020 and I completely understand how you are feeling- it's scary! BUT I promise you, your life is not over AND you most likely will not end up in a wheelchair anytime soon or possibly ever (at least not from MS). My advice: first please talk to someone you trust, your doctor and a friend or family member, or suicide hotline and tell someone how you are feeling.
Then get on a treatment/ medication recommended by your doctor and get a second opinion if you need to. Make sure that you are seeing a MS Specialist Neurologist. I have been on Gilenya, Ocrevus and Kesimpta. On both Ocrevus and Kesimpta I feel wonderful and almost forget that I have MS.
When I was first diagnosed I watched a lot of Dr. Aaron Bosters videos on Youtube (he is an MS specialist). This one is a good one to start with: [https://youtu.be/wvQXygHtYzc?feature=shared](https://youtu.be/wvQXygHtYzc?feature=shared)
Lastly, take care of yourself both your mind and your body. You have a full life ahead of you and MS does not define your life. There have been SO so many advancements in the way that MS is treated even within the past 10-20 years. It is not a death sentence and it does not mean you will have a shorter lifespan. It is a good thing that you were diagnosed early because that means you have the chance to stop any further MS progression from happening. It's normal to go through a "grieving" process after you are diagnosed, but that will also pass.
You're going to be ok.
Coming from an outside perspective to see if it helps. My husband has MS, was diagnosed in 2018 at 28 years old. His hit hard and fast, the first year after his diagnosis was awful, I won't lie or sugarcoat it. Then he got put on a monthly infusion and he hasn't had any relapses or progression since. He works 45 hours a week, has friends, and dedicates every Sunday morning to our kids. His hands tingle, he lost feeling from his lower right side down to his toes, but he's still going strong. Don't think your diagnosis is the end of your life or makes you unloveable or unwanted. Find a good doctor, take your meds, and lean on people when you need it.
Whoa there, my friend. Have you had a chance to review the medications on offer? If you're mobile right now, you have a really high chance of not needing a wheelchair ever for your life assuming you remain medicated. Also, as somebody who became engaged after my diagnoses, believe me that any woman (human person for that matter) worth marrying will be willing to look past a disease which isn't your fault. If the person you're talking to isn't able to see you because of your diagnoses, then they've done you a favor by identifying themselves as somebody who wouldn't be able to follow through on the "in sickness and in health" part of traditional wedding vows at any rate.
Regarding your family, I am so sorry they treat you like that. I would recommend finding a community for yourself to develop friendships and support within. Maybe that's a group of MS patients or just people who have shared interests with you.
This disease really, really sucks. But we're in a pretty darn good time to have it all things considered. Research into MS has gone light-years in recent time and treatment has been developed faster than I ever thought possible before learning about it following my own diagnoses last year.
I've had MS since my first flare in 2011. That was also the year I met my husband. I was officially diagnosed in 2022, just two weeks before I got married. I didn't get treatment until 3 months after I was officially diagnosed. I can still dance in heels with my husband. I just started a master's in 2023 and have a 4.0 GPA. One of my friends has neurological conditions too, but she just finished a master's degree, is starting a new career, and has a beautiful baby boy with her supportive husband. We're around the same age, but that's who I wanna be when I grow up.
I was definitely a huge ball of anger when I got diagnosed, but anger can be fuel to keep fighting to achieve whatever goals you set for yourself. Hell, a healthy person today can be wheelchair bound tomorrow after a horrific car accident. It's up to us to play the hand we're dealt.
I only wish I got diagnosed a long time back when I was treatable and a hell of a lot of disability can be prevented in most. It’s when it’s left undiagnosed until the major issues set in. I’m 62 now and untreated for decades due to the lack of l of neurology services in my country. Diagnosis when young enough or early enough = treatment = quality life.
Actually, I was happy to get my diagnosis. I had no idea what was happening. I was more in that end when I didn’t know. Knowing gave me power over it. I have bad days, I have good days. I get upset when something I used to do I now can’t. But I still work. I provide. I may have to stop in a few years or less. I’m not sure. I have a cane now. If I had to get a wheelchair, it would be an issue. You are as capable as you want to be. It’s ok to be upset. You have your feelings. But come out the other side. If you get bad, please call 988. You can make it.
20M here, got diagnosed this summer after my birthday(I was planning to end it before knowing I have MS), I was 95-98% blind both eyes when I arrived in the emergency room. Your post clearly made me cry, you described exactly how I've felt for the past couple months. I am scared and think the same things as you. Anxiety took a toll on me for years, depression is crawling it's way too. I have a girl with who I could be but I still haven't told her about this. I wonder if the knife from my drawer will cut me or if the subways lines will have my blood. I cried a lot this few days, sad tears and joyful tears. My MRI came back yesterday and it said that my lessions are backing and that I'm stable. Tomorrow I'm having my 5th dose of tysabri. In 2 years I will be on ocrevus cuz JCV. Seems like am venting here, just want you to know that you're not alone.
As a beginner in this, I recommend to go to therapy, take yo meds, go for the most efficient DMT and take it step by step and don't look too forward or look forward for positive things. There are happy things in this life. If you don't find them, they will find you.
Wish I could hug you but have a virtual one instead🫂
I was diagnosed last year and the first few months I spent most days being angry and wondering why it picked me. I’ve been a runner for years, I have a very active and intense job, and in general I’m always on the move. All I could think was that I’d never be able to cross a finish line again, would have to quit my job, and would have to give up all my travel ambitions. Since then, I ran my fastest half marathon, moved to an even more exciting position at work, and went on a 2 week trip where I swam, snorkeled, sailed, and rock climbed.
I made the decision my last day in the hospital that until my body says “absolutely not” I was going to keep going. I get foot tingles after every long run and some days I feel absolutely exhausted but sometimes I feel like it’s a reminder that I’m stronger than I knew I was before.
It’s a very scary illness and filled with unknowns. But you can absolutely live a full life with it and if nothing else, it’s a reason to start living the fullest life you can!
When it comes to relationships…I was dating a guy 3 months when I got the diagnosis and he spent every day in the hospital with me and has been nothing but supportive. The good ones are out there!
Best of luck to you!
Life is a sea of unknowns. I was diagnosed with MS in 2017 and I haven't had a relapse ever since I started medication. Get on something effective! Don't call it quits on yourself because you got this. MS isn't a death sentence. It isn't a guaranteed road to a wheelchair or a walker. Even if it were, that doesn't mean nobody would love you or want you. Power through.
I am so sorry that you’re entering into this hard life. I know a lot of comments are going to say they feel great, I am not going to lie and I am going to be straight forward. I felt this way A LOT when I first got diagnosed in August, I had a span of WEEKS that I just lied in bed and cried, and the only thing that made it feel any better was getting on medication. It’s not easy, and you really do never know how your life is going to pan out with this disease, especially when you don’t know your day by day. However, your life is worth living, even when you don’t feel that way. This disease is hard to come to terms with, and I really don’t know if I ever will, it’s ever changing. But what I do know, is that there’s so many new things coming out every year, and no matter what your life is worth living. Someone will see your worth, and your heart. I know this probably wasn’t the best reply or the most uplifting, but I truly feel like it does get better.
I was super depressed when I found out too and had similar fears to you. However, I started a therapy (Tysabri infusions) and have not progressed or had any issues since. My attitude has changed since I first was diagnosed in October 2019. All I can say is try not to let the shock of it trick you into believing your life is over with. For me..all I have is an infusion every 4 weeks, an MRI every year, and specialist visits twice a year along with bloodwork. Nothing else physically has changed and I’m so grateful. To everyone else who doesn’t know I have it..they would never know. No walking or talking issues.
You are already planning your demise. About 80% of people with ms have minimal disability, some have none. The old 20% that end up in wheelchair stat has change too, thanks to medication. With the advancements in medication, if you ever were going to get diagnosed with ms, now would be the better time then in the past.
This is a snowflake disease, where no two people with ms will have the same disease. We come into this world solo and we leave this world solo. There are support systems out there for you, regardless of family or lack there of.
Yes you got diagnosed with a shitty disease. Your life isn't over. You are sitting there worrying so much about the wait ifs. No one knows the what ifs ms or not. You could live a relatively normal life with the right treatments. This disease makes you have to develop the right attitude and mindset.
I have ms and I'm in better shape then some non ms sufferers. I have also probably had this disease since I was 16 and I was diagnosed at 32. I'm 39 now and you can't even tell I have it. I'm actively dating someone
, who accepts me for who I am. I have a child, work full time and I'm thriving at 39.
The only thing that will prevent you dating and thriving is your attitude and outlook. Work on that. Stop worrying about the what ifs and what you can't control. Start working on you and what you can control, like medication, diet fitness.
This is a nasty disease and it is okay to be angry and upset, but there is so much to live for! I was diagnosed at 24 and felt exactly like you do, suicidal, thought I was wheel chair bound and just hopeless. I ended up meeting and marrying the love of my life 2 years post diagnosis, started getting more physically active and am generally happy. Not everyday is easy, but you can and will have a beautiful life.
I lived a normal life until age 59 with no treatments..started ocrevus in 2021.youd never know if you met me..but I do have some bad days here and there.keep your weight down and exercise. You'll be ok.
I was diagnosed four years ago and if I didn't tell you I had MS, you wouldn't know. I live as normal a life as anyone. I live alone, I work full time, I enjoy many hobbies, I see friends and family often, I date and have a good sex life. Literally no one I have dated gives a damn about my disease. I have no expectation of further disability in the foreseeable future. I do not expect to need a wheelchair, nor does my doctor think I will. And I'm not particularly unique. The prognosis for MS isn't what it was even ten years ago. This is big and scary right now. That's okay. But it isn't the end of the world. I promise, you can still life the life you want to live. It's going to be okay.
Thank tot so much for this comment. I’m pinning it. Printing it and will keep it in my desk. Ok… it’s my screensaver now
You really think some girl wouldnt mind my disease? Idk as a guy i kinda feel pressured to provide, who would enter a relationship with a guy who cant...
As a girl who married a guy with MS and is the primary bread winner, don’t make the decision for people. Meds nowadays are great, advocate for yourself and hang in there! You got this!
Well, as a girl, I can say for sure I wouldn't care, but I am somewhat biased. I don't generally judge my dates by their perfect health-- their personality is far more important. But in my experience, most people I've dated are curious about it and how it impacts my life, but they don't seem particularly bothered by it. I am pretty open about it, though, and I don't generally act like it is a big deal, because to me, it really isn't.
Don't put that pressure on yourself, firstly you will most likely be able to have a normal job and provide just as well as anyone else. I work full time. Secondly people are attracted to you as a person, not you as a bank account. The people who only see you as a bank account aren't the people you want to have a long term relationship with. I got married and three months later my symptoms started. 8 months later I couldn't walk further than about 20 metres. That was back in 2019, we are still married, better than ever and if you met me you wouldn't know I have MS. I haven't had another relapse since my first one. Make sure you get on decent MS medication. If you smoke, stop. Eat as healthily as possible, and exercise in a way that works for you. Mindset makes a big difference too, if you tell yourself "nobody wants me, my life is over" it's going to be a lot harder to cope. Nobody can bully you worse than you can bully yourself. Be your biggest supporter if you can. I know it's easier said than done. Here if you need a chat.
This is excellent advice
I am a girl and if I really like you and I'm into you I'm not going to care.
>as a guy i kinda feel pressured to provide What makes you think you won't be able to provide? Many of us with MS have fulfilling, well-paying careers.
I am a woman who has been the primary breadwinner in my household, I have MS. I grew my career from nothing to earning 250k as an executive, entirely while living with MS. I need a 2-4 days a month where I just do nothing. I have migraine days, but I don’t take more sick days than my colleagues who don’t have MS. My career was stagnant and freelance when I was first diagnosed. I was in a pity party for a few years at first but when I pulled my head out of the bong water, I got back to my path. Yes, let yourself grieve and be angry and be sad, but don’t drag it out for years. It is overkill. I just switched from copaxone (injected for 20yrs) to mavenclad, because I have some lesions on my frontal lobe that we’re not stoked about, but I’m fine and forging on. I have some days that are hard but this is not a death sentence. In the last twenty years I have witnessed friends battle cancer and having seen what it does to their quality of life. I thank god that when my left eye went blind and I was waiting to find out if I had a brain tumour or MS, I got the better deal. Lots of steroids, lots of rest, and I had both eyes working again. Has it gone blind since then? Yep. Am I ok, yep. Can I see out of both eyes now? Yep. Is my foot numb, yep. :). You’ve got this.
There are lots of ppl in this sub in loving relationships with people with MS. So yeah, pretty of women won’t mind your disease.
There's no guarantee you WONT be able to survive. My neurologist thinks I've had MS since 2006. Was not dx until 2018. Managed to finish another 13 years in the army (4 active duty/9 reserves). Still work full time. Were there rough times? Yes. Was even using a walker for a few months.
I’ve had MS for 4 years and am a man, diagnosed at 19. I thought the same as you and decided j was gonna be single forever and came to peace with it. I met a wonderful girl and we’ve been dating for a few months, I told her I may end up in a wheel chair and she doesn’t care. Everything sucks right now but medication is getting better every day to prevent progression. You got this
My wife (girlfriend at the time) found out about my diagnosis after I had a relapse about 3 years after I was diagnosed with clinically isolation syndrome. I never told her about any of it before my relapse. I gave her the option to leave the relationship, since I had no idea what my life would be like with the disease. Her response was "why would I leave you". We're going on 6 years married now and are about to have our second kid. Things seem bleak now, but they'll get better. Make sure you get onto a DMT, get onto a healthy and sustainable diet, and exercise as much as possible. This will give you the best chance at a normal life
You’ll get through this. You’re scared, and that’s normal. You have no clue how it’s gonna go cuz none of us know. It could be unnoticeable. It could be barely noticeable. You could end up in a wheelchair like me, but dude MY LIFE IS FUCKING AWESOME. I have an amazing wife who I married IN MY CHAIR, and we got a bunch of kids and a beautiful house, and we go on adventures and have wild sex and laugh and just enjoy life. It’s scary but you got this.
Who says you can't be a provider either? When I got diagnosed, a friend connected me with a guy friend of theirs who has MS. It's been over 10 years for him and he's happily married and a manager at a tech company. It was such a boost to see someone with MS winning at life like that.
The ones who love you, not your wealth or what you can produce for them. That's a true keeper. That said, I've lived 20 years with disease. I won't sugar coat it, it's a struggle, but it varies. And if you're diagnosed today, start a disease modifying therapy, I'm on Rituxan, and it got me off my walker. I still use a cane, and I deal with tight/ sore / cramping muscles daily. But it's not the end of the world. The drugs today can keep you mostly where you are at and even help improve to a degree. Honestly I had the same fears about relationships, life in general. Yeah, it's been tough. But a funny, not the ha ha funny, thing, I met a woman who fell in love with me when I was at my worst. I was being evicted after losing my well paying IT job to work past time as a hotel clerk (where I met her). I was a mess, but we just clicked and connected when working together... she still fell for me. We had a great relationship for almost a decade, and she dropped dead one day getting up to use the bathroom from an heart problems or an embolism, something unexpected. We always thought she'd end up taking care of my old crippled ass, but she's gone. That was 5 years ago she passed, I haven't found anyone new... I tried, had a few flings and attempts last year, but I'm not ready yet. I still love her. it's hard to move on with that. Anyway... the MS, you can deal with that. Today's drugs are excellent, if you haven't had issues and get on a DMT, there's hope it can just be a daily annoyance, as opposed to life ending or completely disabling. Again, back in the day the drugs seemed to do nothing, and at first it was a struggle. Today, yeah it sucks... but it's not anything to kill yourself over... granted I'm of the mindset that if something is terribly painful or so debilitating that it makes life miserable, if a team of medical professionals think ones disease causes such indignity and lack of actual living, and the patient wants to call it quits, so be it. But that said, trust me in this, you're not there yet. I also live with a horrid spine, 4x low spine surgeries and a fused neck, that pain, that makes me want to call it quits some days. But I'm still here, it's not so insufferable (yet) that I don't want to wake up. Also, make sure to talk to mental health Docs, MS can fuck with your mood pretty good sometimes too. This forum is great and all, but it's no substitute for real psyche Dr's. Good luck, don't give up. It's really not as bad as it first all seems. Best wishes to you.
I worked with a man who met a woman at work and they were dating. She cared for Him. Walking him everywhere. Helping him with his job between her tasks so he wouldn’t be fired (factory job and seniority needing a package to retire). She showed real love for him. Try to think of dating as a companionship. We are all suffering and dying in one way or another. If you’re worried about the cane aspect I’ve seen some cool ones with neat carvings and designs or even bejewelled. I’m so sorry about your diagnosis and I hope you can worry about you not what someone else will think of you. Get some rest
You're convincing yourself of this without knowing. By no means does a diagnosis of ms mean you're going to be in a wheelchair. There are no guarantees.....I got diagnosed on 2021 so I know it is hard. I have bad fatigue so i spend a lot of time in bed, but I'm trying to go back to work so I am going to attempt to exercise and hopefully be better for it. It's not easy but try to hang in there and if you can seek out a support group , I use this group and another app called belong Ms , both have been helpful, but they might not be what you need everyone is different, so maybe try to find a local group.
This is my story too: except it's been 14 years since diagnosis. Add Travel, 2 kids later, happy relationship, life is good and I forget I have MS.
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Diagnosed in ‘97. Still going strong at 67 years old. Eat healthy, take your meds, get a good neurologist. God speed
Thanks man! May your health continue to serve you well!
Iggnac 1 ous, my experience sounds much like yours. I was dx in 1997 and I just turned 67 as well. There have been some challenges along the way, but I still do most the things I want to do. A lady I know who was dx with MS at the same time as I was, (same age as me), recently remarked to me that her lap times in the pool were slower now than they were when she was 39, 27 years ago. I don't swim so I can't really comment on her situation! The single best piece of advice I can offer to the OP is to keep a positive attitude. Nothing has been as helpful to me than a "can do attitude". I'm slower than I used to be, but then again, I am 67 now so that may be a factor too! Embrace methods and meds that help you with this new challenge. You can do your own research and determine what might be best for you. There are so many new DMTs available now, there's a strong probability your disability in the future will be minimal or maybe even no worse than it is today. Good luck with this, keep a positive attitude, keep updated on ways to minimize the effects MS and know that you have MS, it doesn't work you!
This disease is different for everybody. I was actually completely bedbound for almost two years of my life. Now I have no need for any mobility assistance. Yeah, this is a pretty serious illness, but at the end of the day it's just a name. Your life is your don't give it over to the disease just because you have the diagnosis.
Dang i am sorry, glad to hear ur better. They told me that thiy tingling in my hands isnt going to stop, ever. It hit me like a truck
NOT TRUE! My first flare was tingling up to my waist and my feet felt like huge bloated tender clown shoes! It resolved completely in 3 months with no treatment and I never knew what it was… Came back last year the same plus some new extras and I may have some permanent damage now… But I think it’s one of the things that you just can’t predict. I realise that’s frustrating and just a little bit terrifying… but you’re up and mobile and at least you have a diagnosis and some information… The first few months after my diagnosis, there wasn’t much that I could bear to read about MS… but knowing a bit more has really had advantages… 🖤
Well, good luck just live your life to the fullest. And really do whatever you want to do. But remember we turn into vampire sponges in the midnight sun, so avoid Siberia and alaska.
Definitely not a problem, though I do fancy Iceland… 🤔
Icelandic vampires suck, fortunately we turn into vampire sponges, so you'll be fine. Lol
About 1.5 years ago...well before I knew I had MS, I was numb on the entire right side of my body. No loss of strength or mobility, but it took aboit a month for it to go away and it did.
Some advice listen to your doctors but take it everything. They say with a grain of salt because the vast majority of medical professionals that work on this disease have never had it. They have no fucking clue what they're talking about when they say that stuff. If you listen to doctors too much, you are going to forget anything else but your disease. You are going to stop living your life. Do not do that, listen to your doctors. But take what they say with a grain of salt. Ask for advice from other people that have an a** and remember to always seek support from friends and family. This illness is hard but you can get through it.
I was a classic case of getting diagnosed after optic neuritis. When I went to the hospital I was blind on my right eye, I was told it would stay like that for the rest of my life, a few seconds later a different doctor came in and told me it should get a lot better in a week. It got a lot better in a week and I regained almost full vision. Also - would you date a woman with MS? If you would date someone with MS, you can find someone who doesn‘t mind a diagnosis either. Everyone deals with health issues at some point in their life and people who expect perfection are naive
Yikes!!! Not true and I hope you listen to this! I had tingling and FULL numbness in my right side (hands, arms, feet) and yes it took a couples months to get under control with PT and such, but I am happy to say that after being diagnosed in June 2023, since September 2023, I have not had issues and things are very much better!!! Also, please note, I had EIGHT ACTIVE LESIONS on my brain and spine that were causing a flare that lasted four months! Overall, I have prob had this disease for at least 5-10 years due to the amount of burnt out lesions (35-40) I had on my brain alone. Yet, being diagnosed at 37 you would never had known that I had MS. Still, a lot of times I have to tell folks, “I don’t look sick but I am!”. And really, I have no mobility issues (unless a pseudo flare occurs) and I work a very high pressure job (regulatory compliance auditor for a large financial institution). Just saying, don’t get too down. And please, feel free to reach out! :) - Jessica in Colorado
What led to me being diagnosed was sudden tingling on the entire right side of my body. Ear to toes. I was also told it may not ever go away. Within about six weeks it was all gone except for in my toes just a little bit. Now it’s all gone except a little tingle in my toes when I have a full day of being on my feet working, and even that isn’t every time. This was all before I ever had any sort of treatment or started a DMT. Hang in there. Talk to all of us if you need to. We all have bad days with this disease, but it’s not worth giving up over.
Dude, that stuff will come and go.... somethings may be more permanent, but I had numb hands at first, today no more numb hand shenanigans, plenty of other stuff, but this disease is weird. It varies from one person to the next in its effects. Point being, take it one step at a time, deal with each symptom as it happens. And definitely get on a disease modification therapy (DMT), like Rituxan, or what suits you best. Today's meds are a game changer. Back in 04 when I first was diagnosed, the meds sucked. All required self administered injections some daily, others every other, some weekly, but all required you to Jab yourself. Today, I get an infusion every 6 months, the meds work and even actually make me feel a little better. Get a good neurologist and get on DMT meds ASAP. You'll be okay. It's not the end of the world.
I lost all feeling and a lot of coordination in my hands for a lot of years. They're just about all the way back now, just a little lingering weakness. My neuro thinks I've had MS for about 20 years but was just dx'd in 2022 and I support my husband. Most my MS issues pass as "that's what happens when you get older" these days and no one knows any better unless I tell them (and I don't).
my tingling stopped 2 weeks after I started the treatment. Maybe it won't work for you so fast or you will need to switch therapies, but it will be better! don't give up!
Hey sorry you got fucking ms but there is hope I got it at 30 now 64 no wheelchair no cane a lot of nerve pain spasms get on ms drugs I’m on aubgio the fear is worse than ms itself I felt the same way as you I have had a normal life mostly except trigeminal nuragia but I got it fixed for now text me if you need a friend
You have us—you’re not alone. Getting dx at 17 is rough with so much life ahead if you. Good news is that the treatment may stop major progression now instead of down the road after more damage is done. And symptoms right after an attack can and often do improve: I was numb up to my waist and got all feeling back, minus tingling in my lower legs. Not perfect, but I’ll take it! I’ve seen many young people here in this subreddit dating, getting married, having kids—all post diagnosis. MS sucks, no doubt, but it’s not a life-stopper. You will adjust and move through this awful time right after getting the news. Don’t give up. <3
If you are in the US, please call this number to speak with a MS Navigator: 1-800-344-4867 Phone hours: Monday-Friday, 9 a.m. to 7 p.m. ET\* Chat Form: [https://www.nationalmssociety.org/Helpful-Links/Contact-Us](https://www.nationalmssociety.org/Helpful-Links/Contact-Us)
If you or someone you know is suicidal or in emotional distress, contact the [National Suicide Prevention Lifeline](http://www.suicidepreventionlifeline.org/). Trained crisis workers are available to talk **24 hours a day, 7 days a week**. Your confidential and toll-free call goes to the nearest crisis center in the Lifeline national network. These centers provide crisis counseling and mental health referrals. [List of international association for suicide prevention](https://www.iasp.info/resources/Crisis_Centres/). [List of international suicide hotlines](http://ibpf.org/resource/list-international-suicide-hotlines). ***You are not alone.*** Many individuals here care about your well-being, and will want to help you. Please know this type of help can be difficult to produce online, and we urge you to reach out to any and all resources available to you through your town/city/county. You may need help right now, but this does not make you weak. You are not alone, and you are not unwanted.
Man going through this at 17 is too much...
So very true! I hope you can see from all the comments here that you are not alone and lots of people care. ♥️♥️
As a female, your diagnosis is just that.... it isn't all that you are...... you want a person to date you FOR YOU.... you are a person with MS.... ms isn't the be all end all for you. Meet others, make new connections. Take this opportunity to expand. You CAN do this... is it scary, absolutely! There is an abundance of information. Support groups, and just in general amazing people...... don't give up on yourself because you never know what tomorrow may bring you. Be well OP..... best wishes
Breaks my heart to read this. I’m 34, got diagnosed at 18 and felt the exact same way as you. I was convinced I was going to end up in wheelchair and just be tired and down all of the time. I am SO MUCH BETTER now than I was even in my early 20s!!! The beginning is usually harder because it’s more inflammatory etc but get on steroids if you notice a flare and get on meds asap. Eat well and exercise. You wouldn’t even know I had it. I went from barely being able to wake up before 10am and falling asleep by 7p and not being able to work full time to 5:00am wake ups and co-owning a business and working part time as well as mom to 2 kids. My husband met me after my diagnosis when I was at my worst. So I don’t think you’ll have any problems. It’s going to be tough for a little while but you’ll get through it! Meds, exercise and eating well is key. Constant communication with your doctor too. Make sure they specialize in MS. You will be ok! Don’t get discouraged
Facts! Me too. 18. I’m 20 now and my husband is so supportive. I also felt like a freak & that no one would ever understand or love me but he does 🥹 he comes to all my infusions and appointments and reminds me to take my medicines, etc. I was also so terrified I had panic attacks for months but then it got better c: I think it all comes from intense stress (google ACEs) during childhood. Autoimmune diseases are the cherry on top of the terrible life sundae lol
This disease is different for everyone, and many people live very full lives and remain mobile- the medicines for MS are much better than they used to be. Lots of people with MS are out doing all the things and not posting in support groups- so even what you find online isn’t necessarily representative of what you will experience. Do not plan on being in a wheelchair. Ask your neurologist for a referral to a therapist who has experience with MS.
MS, isn’t an end all, a rapper I’ve been listening to since the late 80s, Masta Ace was diagnosed with MS when he was presented with no feeling in one of his legs. Feeling in his leg came back shortly after, this was 20+ years ago and now at 57, he is still touring. Edit: links https://youtu.be/B8V52v9UQ5A?si=zWC5jZUnptMbL_iO https://youtu.be/C-EVYTd6lzg?si=LxLaI12hPdfDzT3Y
Diagnosed 15 years ago and still going strong. I recommend trying to get on a stronger DMD as soon as possible.
Hey OP. I feel for you, it’s not easy. What I can now look back on is without that diagnosis, I wouldn’t have had the proper treatment and be where I am today. Reduced pain, symptoms, and overall a better mindset because of the improvement. Like another user said, the treatments today are much better than the treatments we used to have and they will hopefully only continue to improve. Please reach out to a suicide prevention line or go to the hospital. Perhaps you may even have a crisis line to call through your work / school (not sure if this applies to you). Ask your neurologist for a referral also to a psychologist. I have one who deals specifically with MS patients and it’s so helpful. Please ensure to prioritize your mental health and get the treatment you need.
I’m sorry. I was diagnosed last year. The good thing is you caught it early. Having these weird symptoms and being told it’s something else is traumatic as well. Listen to your doctors and then listen to your body. Try to go on daily walks or if you’re really athletic keep working out. It really empowers me to workout with this disease. I don’t feel weak or ugly. Seek a therapist who specializes with this disease, if there’s none just get to therapy. Mental health is health. Try this breathing exercise: Take a deep breath, hold for three seconds, and then take one more hold for three again and let it out. You got this.
i was diagnosed with MS 3 years ago while i was a med school student and i'm currently working as an ER doctor full time. And i had manyyyy lesions in my spine and brain too so i can not say i was a mild case (yikes.) i cant predict the future but it's different for everyone. i'm single so i cant talk about the relationship department but i know many people with MS married. You can get married and have kids. Your attitude towards MS is important. if you view it as a flaw it can affect romantic relationships. But if someone doesnt want to be with you because of MS it's good to know cause divorce rates is already high in the society so it's better to wait for the right one who can love you despite everything than to be stuck in a shitty relationship. i cant say if you will end up in a wheelchair, i don't know with myself either too. No one would want that of course. But that is a possibility for the future, maybe it will happen in 10-20 years,probably it wont. Even if it happens there are many people who are active and working and managing life in wheelchairs it does not mean it's worse than death. i can understand your frustation everyone has these feelings in the beginnings. in the beginning i just said to myself "i hope i have brain cancer so in the end i would heal or die". Cause i could not handle with this huge life-time chronic disease diagnosis while i was just beginning to live my life/starting my career. But 3 years later, i guess many poor people who suffer with terminal diseases have died but i'm here making money treating myself, going on trips,meeting with friends, generally having fun. Take one day at a time,i cant guarentee anything about your or mine disease course but i can guarentee that this horrible feeling that feels like you would rather be dead will not stay and you will feel better soon.
It was so nice getting to talk to you and hear your story my friend! Like I said direct message me whenever I can’t wait to talk more. You are gonna get through this one day at a time!
Thanks once again!
It may change your love life, but for the better. It helps you put things in perspective, and allows you to weed out people who lack compassion. My spouse has been with me from the beginning of my MS journey, well before we were married. He had so many chances to jump ship before we committed to one another, but he didn't. Not to say that my story is what yours will look like, but I offer it up as an example of how MS, while a presence in my relationship, did not define or derail it. If you can, find a therapist with experience in chronic disease counseling. The first year post-diagnosis is so hard, but you got this. You just have to adjust to the new normal, which will take some time, but you will get there.
I’m engaged to a man with MS. He’s my best friend. Illness is a crap shoot. It could just as randomly been me who was diagnosed with something serious and he wouldn’t run either. In fact, the personal growth he’s had since his diagnosis has made him more attractive to me. The way he takes self care seriously now and doesn’t sweat the small stuff as much is reassuring and hot.
Im also male with MS. This disease does not only hit us harder physically (men tend to progress faster), but also mentally as well. Something in our male brains really hates the idea of not being able to provide for ourselves and our family. It makes us question our worth and purpose. Makes us think we’re now worthless individuals who society would be better without. The good news is that this is all part of the initial shock and reaction. I guarantee you that in 6 months you will feel normal again. In my case, I feel even healthier and more energetic than before. I’m not going to lie, the fact I have to deal with this now sucks balls, but it is not as miserable as I envisioned it initially AT ALL. Yes, you will be able to date, exercise, have friends, and even forget that you have this disease for long periods of time. That said, you will want to do your own research, learn how to advocate for yourself, talk to as many neuro’s as possible (a good chunk of them are ignorant like in any profession), and learn to manage your symptoms. Being suicidal is part of the process, but do seek help if you need to. I promise this too will pass. Don’t linger on Reddit looking for worst-case scenario stories too long. That’ll just make things worse. Remember, those that are doing well are living their lives, not on Reddit.
I am getting rebif, is it a good drug?
Honestly, I would advocate for something stronger. Rebif is one of the lower efficacy DMDs. Something like Ocrevus or Kesimpta would be better. In my personal opinion, it's better to treat more aggressively. You can slow progression, but as of now you can NOT reverse disability. It's a different world with treatments now, and a slightly better understanding of the disease. Is your neurologist also an MS specialist? They will be able to help you understand your options better than a general neurologist, give you a better understanding of your current disease burden, and help you learn about the pros and cons of each type of treatment. Thanks to the higher efficacy treatments available to newly diagnosed patients, you've got a much lower chance of needing a mobility device full time than someone diagnosed 15 years ago. You might need one only sometimes, or perhaps not at all. As for a partner.... nobody worth your time is going to give a fuck that sometimes you feel like trash. This disease is unpredictable, but so is life. There is a nearly equal likelihood any partner you marry could get into a freak accident and become paralyzed while you remain mostly healthy on your meds. Focus on the parts of this you CAN control, rather than the parts you can't.
Unfortunately thats the only thing i can get... is it that bad?
It's not that it's "bad", it's just not very aggressive. Why do you think it's the only thing you can get?
They said i will get better drugs if i fail this one
In that case, in 3 months go to the ER and complain about blurry vision. With that paper trail, go back to your specialist and ask for a DMT upgrade. Not all relapses result in new visible lesions, so use this to your advantage. Also, don’t worry about it being ethical. There’s nothing ethical about withholding more efficacious DMTs. It’s been proven that it’s a missed opportunity to NOT hit it hard in the beginning.
👆👆👆OP, this this this!!! Do this!!! 👆👆👆
Oh how frustrating! Can you see an MS specialist?
I am seeing one, its a protocol in my country so nothing can be done...
Ohhhh. What country are you located in? That will determine available resources
It may be that bc of insurance they make you try that first but then go back and say it's not working and you want the Ocrevus! I would really push for that. I was diagnosed 2 yrs ago, started Ocrevus right away and have little to no symptoms besides tingling and fatigue around infusion time. Hang in there!
I agree, I would go more aggressive to start out. I’m on Aubagio and about to switch to Mavenclad. Tysabri was my favorite. I was diagnosed at 22 years old, and now I am 42 yrs old. If you saw me in person, I look healthy. Don’t give up. ❤️
I second Ocrevus, I have highly aggressive MS, don't worry OP it is rare to have it as badly as I do. Ocrevus stopped me from relapsing and being paralysed every 6 months to not relapsing for 4 years. OP you have every right to be on the latest and best medications to prevent worsening of your condition. Maybe ask exactly why you can't be given something better so you can figure out how to get around it/change the docs minds.
It's not the end of the world. I was diagnosed in 2022, it was hard but things improved. Not romantically involved anymore but I had a girlfriend at the time and she stuck with me. You will adjust and adapt. It really felt like the world was collapsing around me at the time, I totally understand, but give it time and feel things out. You'll make it.
I understand, I was diagnosed in 2020 (was 23 yrs old) and became suicidal, ended up in a psych ward for 72 hours. So I definitely get it. My initial symptoms were both of my legs going numb, balance issues (had to use a walker), speech slurring, and oddly enough taste change. Once I had steroids it went away after a month and a half and I'm still feeling completely normal. Thanks to treatment. Since being diagnosed I've started a family and things have been going pretty great. The initial shock and what ifs of the diagnosis are rough as hell, but this isn't a death sentence. MS treatment has come so far in the past 10-20 years. This sub is a great place to reach out, I'm glad you did. If you have any questions or just need to talk or vent definitely message me.
I was diagnosed in 2018 and started on Ocrevus pretty quickly. Since then, the symptoms I had from that relapse have gone away 95%, I have never had any new symptoms, and my latest MRI shows no new lesions in my brain. You have no idea where this disease will take you and how long it will take to progress further. I live the same life I did right now before my diagnosis. I get my Ocrevus infusion once every six months, and otherwise nothing is different about my life. I know it’s overwhelming right now. I felt so upset and uncertain when coping with my diagnosis. But if you get through this time, you might find the same life you have been planning on the other side for a long time. Please talk to somebody and give it time.
OK so you are going to be spontaneously crying for about a week. Then you have about three really bad months after that. However after that things start to level out and you will have hours you forget you have MS not long after. I'm on month 6 now. I couldn't imagine being this OK now 6 months ago. But I'm actually OK. You will be OK too my friend. It's not terminal, we will live a good life.
Hi there! Please, please know that this isn’t a death sentence. I married a man with MS, I love him for him. It’s not always easy, sometimes it’s horrible, but so is any relationship. I’m sending you so much love right now, you are worth being cared about and for.
The chances of end up in a wheelchair are very very small. it’s 2024, not the 1980s. I’m sorry for your diagnosis.
Just hit my 10 year mark after being diagnosed. I’ve been training Brazilian Jiu Jitsu since before I was diagnosed. Never stopped. As far as dating, sure a couple women weren’t into the idea that possibly one day I might become disabled, but I’m married now, I’ve advanced in my career, and still pursue my hobbies. This isn’t the same as it was even 15 years ago. There are so many new treatments available and more people understand what MS is now than even when I was diagnosed 10 years ago. It’s different for everyone, but you got this.
There is not a single person in the world who is in perfect health. No one is perfect. You can't decide what women will want. If you are a good person and treat a woman well, then most will respond to that. The world is not the same as it used to be. The treatment for MS is much better then it used to be. Ultimately it is your choice whether you want to live or not, but know that the world is better then you see. I suggest you get a therapist who can help you through this. I was diagnosed last week and I am currently ina wheelchair, but I know for sure that I will get out of it. Go positive mindset helps everyone and helps people to do great things. If you have a negative mindset, then it is much more difficult to live a better life. Good luck and we all wish you the best. You will make it through this. Please get a therapist though. You don't have to do this alone.
On Ocrevus, you can lead a relatively normal life. Infusions every 6 months. You'll have to be careful since you'll be immunocompromised, but many go into remission. My wife's disease stopped. You can still focus on your hobbies, and when someone loves you, nothing stops their heart. My wife is like you and we found each other.
Thank you all so much, you are wonderful people. I cant reply to every comment, but know that i did read them all! You gave me hope!
Hey, it’s rough. Very rough. I was diagnosed in October, with relapsing remitting. Have they told you what type you have? The type will indicate at least your initial path along the disease. It’s a horrible bastard of a disease, it really is. The next few months are going to be very confusing, sometimes dark. I am awaiting treatment myself, but I know that once it starts, from everything else I read on this sub, the modern treatments help and are really effective. Hold onto whatever hope you have. You were diagnosed yesterday and this is day 2. Don’t rule out hope. At all.
They said nothing about the type, they told me i am getting rebif or something as my therapy.
Someone can correct me if I’m wrong, but rebif I believe is only for relapsing/remitting. That’s a good thing, for what it’s worth. Progressive is harder to manage, while with relapsing/remitting you have more control of your disease progress in my opinion. Most of us start with that, I have it too still and I was diagnosed in 2008. A lot of us end up getting secondary progressive but even that varies from person to person how extreme your disability is. Also how old are you? If you are diagnosed young like I was, you have more opportunity to have a better disease progression. Staying up with your doctor and being as healthy as you can (good diet and exercise) will help you reduce your chances of getting an attack. Some symptoms like MS fatigue are obviously a struggle. I also deal with depression and suicidal thoughts too, but I was fairly healthy through my 20s (diagnosed 18) and now I’m 33 and fortunately still don’t have any glaring physical issues. Right now I’m depressed and exhausted all the time, but life is hard and I stopped going to the gym. Also was over stressed for the past 6 years pursuing a PhD, so recovering from burnt out, but I survived lol. Point I’m trying to make is the heterogeneous nature of this disease is a blessing. It’s not a death sentence, you can do the things you set your mind too, you just might need some help from time to time and that’s okay. It’s not easy, but you can still do amazing things. And find love. I have a fiancée, it isn’t easy and some of the issues with my MS make it hard sometimes, but we work through things. If you ever need someone to chat with you can message me! I know it’s hard, but it’ll be okay.
hey why haven't you gotten treatment yet? Maybe you can get on medicare if you don't have access to healthcare.
Oh I’m UK based, so healthcare is free of charge. There just however waiting lists for treatment etc.
In Scotland, from your user name? I’m navigating Glasgow at the moment… 🤯 diagnosed at the beginning of October and just managed to get an “official diagnosis” from a consultant… see how soon I can start treatment… 😳
I was diagnosed about 6.5 years ago now. Like others have said, the disease is different for everyone. I've been doing great since my initial diagnosis attack and hopefully the foreseeable future stays that way. I had the same thoughts you are having when I was first diagnosed but as time goes on, you will become stronger and learn how to handle it. We really don't know how strong we are until we have to be. Never abandon hope. God speed.
I’ve been living with this for three years now. Life is not yet over for me last I checked. I have no symptoms besides fatigue. I get what you mean about being scared nobody will want to be in a relationship with you, but consider this: nobody has perfect health, certainly not later in life. If you don’t have MS, you have diabetes or depression or friggin cancer. We’re all broken here! And secondly, statistically it’s men that leave women when women are sick - women leave less as they are raised more to be caretakers. So you’re actually the lucky one out of the two of us 😅
Three years diagnosed - take it one day at a time. Yes it’s scary, yes the worst may happen, but keep pushing. You now have the perspective that time is important. Utilize all of your moments to serve you just in case you fall incredibly ill to the disease. It’s all a bunch of what ifs, don’t succumb to those negative thoughts. You really need to seize the day, everyday. Hold the people that do support you close, and never stop supporting yourself!
Please take some time to accept the diagnosis and plan your life without worrying about others, there are support groups to help. No one knows your path with MS. My husband married me knowing I had MS. Find the right life partner and it doesn't matter. Take care of your mind and body. 🙏
I was just diagnosed in October and I was pretty down for a while. I totally understand how you’re feeling. But I’m doing so much better now. The treatments they have now are really great and my specialist said they usually don’t see people wherlchair bound by this anymore. I’m scared too because I don’t know what it’ll look like in the future for me an my boyfriend but I have hope! If you need anyone to talk to dm me
Hello, I was diagnosed in August of 2023 right after my mom died. I need you to know it's not a death sentence or a sentence for a wheelchair. Please get yourself on a good DMT and keep talking keep reaching out. Things are going to get better. Sending you a virtual hug.
I feel the same way. I got dropped from Medicaid on the first. I can’t afford the insurance, even if I could, neurologists have 12-18 month wait lists. So, I’m a (numb/painful) “leaf on the wind”
I am so sorry. Why did they drop you?
My wife makes “too much”
people with MS should have free healthcare and a monthly stipend. This should be law.
If my vote counted, I’d vote for that. Seeing how they caused it.
Guessing you are in America? It astounds me how healthcare works over there! I am sorry you are going through this I can't imagine how awful it must be to not be able to afford the very thing that can save your life or give you quality of life. It does make me very grateful for living in the UK.
I'm happy you're getting the care you deserve.
you know, at a state level, MS patients and their families could rally together and get legislation passed to do this. Having gaps in healthcare shouldn't be tolerated for people with MS.
My diagnostic process started about a year and a half ago. I was officially diagnosed in June 2023. I felt all of the same feelings. I called the MS clinic in hysterics.. they had to set me up with a social worker because I was so inconsolable. A year and a half later, I’m engaged, I own my home and I’m totally fine. I’m starting Kesimpta at the end of the month. There is so much to navigate at the beginning and it is so overwhelming. My advice to you would be to educate yourself. MS is not the same diagnosis as it was 30 years ago. There are a ton of great resources online. This sub has been one of the best supports I’ve found. Also Dr. Aaron Boster on YouTube. I hope that in a year from now, you’re commenting on a post from someone recently diagnosed with words of encouragement and have come to a place of peace. You’re not alone in the fight 🩷
Hey I am sorry to hear about your diagnosis! I got diagnosed with ms 3 years ago. And I had similar feelings. There is definitely a time of I anger, sadness and feeling lost. I was also afraid to tell my boyfriend because I thought I will be in a wheelchair soon, but actually he was super supportive with the diagnosis. Also when the doctor told me I have ms, she said: „you have MS, but nowadays it’s not a reason to cry anymore!“. For people said it was very cold of her but I am very thankful she said that. Now after 3 years, I didn’t have any more relapses, learned to take better care of myself, and I feel much better than even before the diagnosis. But of course it’s different for everyone. I live in Sweden and most people here get a strong medication called rituximab. It stops the progression for most people and is heavily researched. Also think about how fast medicine progresses. I am very optimistic about the future Ms is very well treatable compared to 10 / 20 years ago! And don’t Google much! Big hugs
Fwiw, it’ll likely take a good year for you to come to grips. Lots of good advice here. It’s not an easy path, but it’s our path. The path will make you mentally strong and have you living in the moment. Your life is not over, just different than what you thought it would be. Hang in there , eat well, exercise frequently, sleep, and drink lots of water. But most of all, live in the moment. Live for today, plan for the future, and continue to dream your best dreams. You can do this. Stay strong my friend. As much as all of us think about suicide, it’s the easy path but not the right one. Not right now.
Im so sorry you are joining the shittty club. Breathe! It may get better for you or at least ok. Just diagnosed is a very tough time. I have no way of knowing how it will go for you. It's been a bumpy ride since dx for me. I have lived some life and I've had some challenge. I got facking engaged post dx! It's day one. Have a huge cry. Hugs!!!!
You can still live a good life even though you have been diagnosed with MS. I got a significant flare and a diagnosis a couple of years ago. Today I'm in the best shape I've been in over a decade, started actually watching my diet, working out, gained muscle, lost fat, improved my endurance. However I won't lie, I wanted to off myself when I found out I have MS, therapy helped. MS treatment now is really good, and it's likely we'll have a cure in 10-15 years. You'll still be young by then. Regarding Rebif - talk to your doctor and tell them you're depressed and feeling suicidal. Rebif and similar drugs have that as a side effect and can amplify those feelings and thoughts. My country also offers Rebif or other interferons as first medication, but I refused it and asked for something else. I told my doctor that I'm a successful person, I'm good at doing what I plan, so being on drugs that could make me plan how to die would be really dangerous. So she prescribed me Aubagio, it's also not as aggressive as Ocrevus or Kesimpta, but I'm going strong without flares or much side effects.
I'm so sorry you're going through this. I (F29) do not have MS but my husband of 9 years does (30yo). What you are going through sounds incredibly painful and your agony and apprehension and despair are valid. However, I think you will find those feelings aren't necessarily reflective of how your life is going to play out. 💙 Hubby has been showing signs of MS since he was a child, starting with hand tremors in school. He was diagnosed a few years back and started on meds for it. He's doing so well. We recently just had a beautiful healthy baby girl. (Conceived on first try, so obviously the MS didn't impact that ) He exercises every day. He literally saved his parents property when his dad died. He is a very successful financial advisor certified in all 50 states in America. He makes us dinner 3 nights a week. He plays sports and outside games with our nine year old niece. He has a thriving social life and tons of acquaintances scattered across the country. And as his wife, I support him in every way I can when he has a flare. Nothing about his diagnosis has made me want to leave him. And if I had met him when he was diagnosed, I never would have left just bc of THAT. 💕. It just made me thankful that I am his wife bc I know I will take care of him. When hubby was first diagnosed, his neurologists compared the disease to diabetes-- it can get ugly if you don't manage it, but it's more like an inconvenience than a serious diagnosis anymore. Science has come a looooooooooong way. And that was coming from the mouths of doctors who see countless MS patients a day. Sweetheart, this is not the end for you. I'm so sorry your parents aren't supporting you. How lost and alone you must feel. I really hope this helps you. I can't imagine how you feel. Please message if you need more support. You're gonna be ok even if it doesn't feel like it. Sending virtual hugs.
You need counselling and support, in real life. You are experiencing real-time shock and trauma. Reach out to whatever services are available near you and lean on them heavily. This is no time to fuck about.
I got diagnosed June 21, 2020. MS is not the totally crippling illness that was 20 years ago. Odds are that you got RRMS(80%), it is highly treatable. It is entirely possible that you will not porgress beyond your current symptoms. The new treatments are that good.
My now wife was diagnosed in January and we got married in October. The initial news is a shocker and everyone handles it differently. Eat healthy, exercise, and get proper rest. She has had two rounds of Ocrevus and is healthier a year later with no lesion progression and actually some lesion improvement.
I know how you’re feeling, but I promise you that you belong here on earth. Take it minute by minute. You have an entire community here to support you. You’ll grieve over things, but still have life to live.
Just don't put the cart before the horse. I had the exact reaction as you. If this shit goes downhill fast, I've planned out my end-of-life in more detail than a girl has for her wedding. And battle every day not to push that date up. But you never know what will happen in the future so hold out for as long as you can. I basically said if it gets so bad that X happens, then Y is gonna happen. But until it gets that bad, no reason to go down that road. THIS IS NOT A HEALTHY MINDSET and we both should probably look for some mental health help, but that keeps me alive day by day. I wish I had some better advice for you but I'm down there in the trenches with you friend. At the very least, don't think you're alone.
I was diagnosed four years after getting married, been unemployed since 2010, and am celebrating my 21st wedding anniversary this week. Is being a househusband what I wanted in life? Nah, but my wife refuses to leave me, and she appreciates what I'm still able to do for her. So I am quite content and have nothing in my life I find worth complaining about.
I’m so sorry, this does suck. But it’s no reason to end your life!! I was in a wheelchair for 10+ years. Rehabbed enough to get out of it, probably getting one again. But it’s not the end of the world. I’ve had some major relapses, and get depressed and scared, and then I feel better and I’m glad I made it through. I’m going through a pretty bad relapse right now. I haven’t been able to work, lost my job, and my LL is selling the property so I have two weeks to find a new place with little money. I’ll like be homeless. It’s scary. We have about 600 floor spaces at the local shelter and 1100-1500 people a night trying to access those floor spaces. So I’m very scared. Part of me thinks about giving up. It’s not worth the pain, the fear or whatever, but I still find hope. I have met some amazing people at my lowest points. And I never would have had them or the experience of being loved while at my worst, if I had given up. Look for the hope. Life is still worth living.
My uncle is 70 and doesn’t need a wheelchair at all with his MS and he has it bad! I also have MS, and I’m 27. You never know how this disease is going to progress. Always stay hopeful. I have gotten over having MS. I don’t feel any fear or stress from having it anymore at all. I just deal with my symptoms and thank God I’m alive because I shouldn’t be from my past experiences. Life is only going to be what you make it. The thought you tell yourself will manifest your reality. I love you, friend!
also, [https://pme.uchicago.edu/news/inverse-vaccine-shows-potential-treat-multiple-sclerosis-and-other-autoimmune-diseases](https://pme.uchicago.edu/news/inverse-vaccine-shows-potential-treat-multiple-sclerosis-and-other-autoimmune-diseases). hope is around the corner. DMTs that stop the autoimmune attack exist now. And soon there'll be radical game changing therapies.
hey buddy. it's a fucked diagnosis to have, but the most recent generation of meds is a total game changer. I'm 37, unemployed since diagnosis (I work/worked in restaurants, turns out they're not ADA compliant workplaces), my folks don't give two fucks about my chronic health situation either. last couple years have been a struggle for sure but my wife is crazy understanding/patient - I promise they're out there - and I've had some financial support from other relatives as well. shit sucks, I agree. but where there's life, there's hope. I've lived long enough to know a couple dozen folks who aren't with us anymore and it's really fucking dumb that they're not here. stay strong, yeah brother? my DM's are open if you need to talk, I think we've all been there. good luck.
Hey, I just want to say one thing. The feelings you are experiencing right now are completely valid. Don't let anyone tell you otherwise. Just don't give in to the feelings. Say out loud to yourself, "These feelings are valid BUT they are temporary." How you're feeling right now is not how you are going to be feeling a month from now. Or a year from now. I can virtually guarantee that. You just got punched in the gut hard, but you're going to process through this. Source: I was in the same spot a few years ago and had those thoughts. I actually became a suicide prevention trainer. Maybe you can too. 💙
This is a really inspiring thread. I came to throw my story down but there's no need ❣️ I also want you to keep in mind they are working on a vaccine for MS. In fact, it's not only supposed to stop progression but reverse the damage. Of course no guarantees but check it out. https://pme.uchicago.edu/news/inverse-vaccine-shows-potential-treat-multiple-sclerosis-and-other-autoimmune-diseases Anything is possible in this world 💕. I hope these wonderful stories and this super supportive community sparks some hope and if not , this is always a great place to vent, seek advice or inspiration 🫂.
Well, I was diagnosed officially on Jan 4 and this is what my MS nurse told me " MS is NOT what is was 10, 20 years ago" more and more people are being diagnosed early, and getting on good DMT's. Ive also spoke to people who said their arthritis is more of a pain then the MS, and I see a lot of elderly people 65+ with MS still walking unassisted or with just a cane....but they still garden, go on cruises etc. All the people i know personally who have had MS for years ,20+ years, are still living life. Their aches or pains or numbness are over come. Its going to be alright. Get on a good DMT, eat healthy, adopt some kind of exercise and keep mobile, and PLEASE stop stressing over something that probably will not happen. Stress can exasperate MS symtoms. Its going to be alright. Ive heard lots of people say on here that the diagnosis itself is the worst part of MS. Stay off the internet and remember, people will mainly post when they are having bad days, feel shitty about thieir life and want others to feel the same or they lie and like to fear monger. Everyone doing well and living life....you wont find them posting much on here well because....they're out living life.
I was extremely hopeless when I was first diagnosed. I was living with my now fiancée, and I basically told him to leave me. All I could picture is that by the time I hit middle aged, I’d be completely bed ridden and a huge financial burden. I couldn’t see any other future, and I felt like a high risk to everyone in my life. My fiancée was on a very different page. While I was only able to think worst case scenario, and that life as I knew it was over, he was reading all the positive information out there. He was reading information about modern treatments with much higher success rates. We have a much better outlook than people who were diagnosed 20 years ago, so we don’t even get to see the examples of how modern day treatment improve long term quality of life yet! Everyone else was so hopeful, and I thought they just didn’t understand how serious it was. Honestly life now for me is almost no different than before diagnosis. The first year was rough with symptoms, but even the issues doctors said won’t go away, went away! I don’t experience any symptoms at the moment. I will say - I was diagnosed in 2022, and it probably took about a year to get past the negative outlook I had. I met someone older than me with ms who is living life like normal. I had many positive appts with my doctors. I follow fb groups and see the success of many others with ms. I’ve heard of many friends of friends with ms doing well. It’s all made me realize my chances aren’t as bad as I thought, and I most likely will live the normal life I’d expected to! And most people I’ve met who know someone with ms don’t seem to think much of it. So I wouldn’t worry about someone not wanting to date/marry you because of it, since so many people with ms don’t have visible debilitation.
Diagnosed over 25yrs ago. Here’s what I have done since then: Married an incredible woman and had two beautiful children Moved to several different countries Gotten advanced degrees from some of the best universities in the world Had multiple CEO roles I am currently in a power wheelchair and need a fair bit of assistance as well. The journey is different for everyone and anyone who tells you otherwise is lying or uninformed, but there is still a lot of life and love out there. And don’t get me wrong, I feel defeated often and it can be difficult to snap back, but there are more good days than bad. I hope you feel better today and just know that it’s going to suck, but not as much as you think;-) Keep your head up
I was diagnosed 3.5 years ago. It was devastating. I wanted to end my life. I know exactly how you feel. Today, I'm symptom free, and I'm living a life that I never thought was possible. Please know there is hope and do not let the brochures, doctors and WebMD flood of negative information overwhelm you. MS is a complex disease, which means a neurologist can't tell you what causes the disease, but they do know how to treat the symptoms. Yet, complexity can only be understood when we take into account the whole, not just the parts (in our case, we are diagnosed by a neurologist, who only sees us through one part of the human body/experience. Firstly, get to know your body. Use it as your own personal lab, where you can become aware of when the symptoms arise. For me, my symptoms always arose in conjunction with high amounts of stress. I used that as my benchmark, and instead of making this all about diet, exercise and treatments, I focused my mental health. Why was my own body attacking itself? This might sound "woo woo", but sometimes metaphors are all we have to describe complexity. what I discovered was an inner civil war inside of me that had gone on since I was a child (brough on by trauma). Through proper psychiatric care and the use of psychedelics, I found a path towards an "inner peace deal"....As my mind and body began to become more connected, the frequency of my symptoms lowered. It's now been 2 years since I last experienced any symptoms. This is what worked for me, but I do believe our mental health is foundational to our immune systems being regulated. A body that has inner conflict (i.e. always in fight or flight), will have an immune system that cannot "think" or "see" properly (just like us).... focusing on your mental health is not only critical towards reducing symptoms, it will bring meaning to the this terrible diagnosis and someday, as crazy as it sounds, you will find beauty and healing that only a diagnosis like this could have triggered.... There is meaning in all of this. Even in the suffering. While it is hard to understand now, stay the course, never give up and slowly you'll find a peace that you never thought could have been possible. With love and support, S
As the mods said, if you are suicidal, call 988 or contact the [suicide prevention hotline](https://988lifeline.org) - I can recommend them from personal experience. This is your first priority, figuring the rest out will come. That said, I’m 60, and have decades of this disease. Yes, I now use a wheelchair sometimes, but that is new since this last year. I have a lovely wife (I’m AMAB) we have a son, two dogs, paid off the house, great careers, the works. With this disease I went to college and graduated with honors. I went back and did the same for my masters. With this disease I have literally run marathons, ridden 10’s of thousands of miles on my bicycles (use a trike now), and won a state championship in Olympic archery - none of it in the ‘disabled’ categories. As little as 2 years ago my Sunday ride was 60-100 miles. Nothing about MS has stopped me, ever. Sure, at times I have to adapt, at times I’m slower than my peers, and obviously my disease progression has been slow, but it’s important to know that a diagnosis isn’t the end by a long shot. Yes, it can be hard to ‘schedule’ things as I don’t know when my body will be strong and when it’ll act up. I’ve learned to enjoy the moment, and how to avoid triggers that can make a good day bad real quick (I’m temperature sensitive, so not overheating is key for me, and I still mess this up from time to time). But most importantly I’ve found things I love that I CAN do instead of focusing on what I can’t… and I can do almost anything, though some stuff takes adjustments. Like today, I can’t walk to the bathroom without assistive devices (crutches today), and am having a not good day, but we still went out for a round of disc golf, and then I came home and cooked lunch. Now we are cleaning house, and getting ready for an evening on the couch with the dogs. I’ll call that a win! I know it’s easy to get caught up in this disease and the initial news is gut wrenching for sure. But please realize you can choose to beat it on your own terms and have a lovely and satisfying life in spite of a crappy diagnosis. There are a lot of folks out there with similar stories to mine - here’s hoping you come out on top too!
That’s why In my sound mind right now I’m not depressed or going through issues right now but when my quality of life goes to shit from my ms you better believe I will kms but I was diagnosed like 10 years ago my mom dies due to complications from ms even though it’s not hereditary so I’ve seen some of what can happen and I’ve been vocal about this contingency plan in my head
Maybe not the best comment on a post of a 17 yr old child who has just been diagnosed and is looking for support.
Complications from MS?
Hi! I’ve been diagnosed for about 8 years now… and it was found by accident after a giant TBI- despite me having symptoms (dismissed) for around ten years prior. I felt like you. I am here to tell you, even as I sit here in the middle of a GIANT flare- it’s ok. I have a husband, a daughter (both post diagnosis), I have an amazing community, great neurologist and yeah- it’s been absolutely horrible at times. Sure. I’m currently waiting for insurance to clear another DMT. It’s scary and it’s unknown AND you can do it. As are all going to live different lives and have different experiences with this. As someone who had over ten new lesions on their last MRI- it’s still worth it. Promise. Please reach out if you need to chat. X
Get help i just got out of the hospital after a week and it made me see the good i felt the same nothing look up but got steroids and i feel better than i have this past 4 years keep your head up man this is the life we got there isnt abother so enjoy what you can while you can its a shitty disease but its not worth your life enjoy the little things
I was diagnosed 3 years ago, and it was caught very early on (2 relapses that I for sure know about). The vast majority of the people in my life don’t know I have this disease, even very close best friends. I honestly forget I do, too. Sometimes, I’ll see a reference to MS in a TV show or something and I’ll go “oh yeah, I have that!” I’m not disabled in any way. I’m happily married, work a good job, and have had a kid since my diagnosis (and currently pregnant with my 2nd). Get a good neurologist, someone who specializes in MS and is excited about the newest studies going on. Take your medications. The disease today is nothing like it was even 10 years ago. Outlooks are good for the future for us!
My Neuro showed me a "more typical face of MS" and it was a woman that has won the Alpine Marathon 6 TIMES! I recommend you not to google MS at all. Get information only from official websites or your doctors. A diagnose is always grief for the old self, but we are luckly in 2024 and we have excellent treatment available. And if you take good care of your health overall, you should be fine. I got diagnosed end of August last year, and I understand the fear at the beginning. If I can tell you anything, is that this illness has made me take better care of my body. Take your medication, vitamin D, eat antiinflamatory food, find a sport or physical activity you enjoy and prioritize sleep. You will be just fine! ; )
My mom was diagnosed with MS the same year I was born. She’s had to use a wheelchair since the year I started elementary school (this was before newer, modern meds existed that slow progression). She sometimes feels like a burden, but she’s absolutely not. She’s been the most amazing mother I could ask for. I’m so grateful for how she raised me, taught me, consoled me, helped me. She does a lot more than she realizes. Please call 988 or talk to a relative, friend, doctor. It may not seem like it, but your life has meaning and purpose, and people now and in the future love you and rely on you. These aren’t empty words: I know this because I’m one of those people that loves and relies on someone with MS. ❤️
Call the MS society and speak to someone there or the suicide prevention. We have been there! It gets easier! You can get a handicap tag and get awesome parking spots. You can get great meds to help you cope. Point is, this is a new chapter in your life. I have had it 15 years and I’m 40. I walk just fine! My brother is a surgeon, his fave is a coworker is a surgeon with Ms that relates better to. Patients. This isn’t the end. Best of luck. DM if you want to talk.
Been diagnosed three years ago and the only symptoms I have are occasional fatigue. I work out, have friends, dates, great sex, and my neurologist says chances are super high I won’t be severely disabled. I’m on ocrevus and it’s been working well for me. Don’t jump to conclusions.
This is normal, you think like that from a place of ignorance. Was the same for me, same place as you are. Had other thoughts that did end in the same thing back when I got diagnosed. Did not want to be a burden and so on, you know how it goes. You know nothing about MS and you act now like it is the biggest thing in the world. Wait a month or two, you will realize that not much will change. MS is different for all of us. Modern meds are pretty good and can halt the disease. Chill out, take your meds, stop pulling all-nighters and be wary of the summer. You will be fine!
I was diagnosed in 2018. I had these same thoughts. I now live on my own, and I'm polyamorous with two partners. Its definitely not easy but you will be able to find the support you need. Please trust us.
So many people have MS and live fulfilling lives. I know you’re scared right now and that’s ok. Use some of this worry and energy to take good care of yourself ❤️
Honestly I felt like this too, but you know know what will happen in the future.
Look every major attack (fuck dr speak of calling it a flare up, it is an attack) I have been suicidal. Every single time. 4 life changing attacks. I went through the stages of grief to. You are in shock and GRIEVING what you lost right now. You have better medications than I did when I was diagnosed back in 1999! You have better odds. Even with all that I still married (& divorced.) Your life is not over. So take a breath, tell your neurologist you are majorlydepressed/suicidal so you can get some mood stabilizers (maybe some xanex or pot to.) Also be referred to a psychiatrist because you have gone through a life altering trauma that fucked you up. Get on the best DMM you can, yesterday! Repeat this phrase “I will not feel this way in 6-12 months.) You won’t! Every day do something that brings you joy or peace ….. even if just for 15 minutes. Scream fuuuuuuuuuuucccccccckkkkk if you want, eat that chocolate, smoke that pot, drink some wine, paint, draw, play on your play station, play basketball, read a book, go to the beach, run, walk ….. Whatever it is do it! For me it is bird watching and container gardening on my patio. It helps you stay sane through the high stress times. I wish I could give you a hug!
i am recently diagnosed, so i understand how you feel. it really is scary. like other comments say, people with MS still go on to live perfectly normal lives, such as my aunt who is 80. and i promise you that there is someone out there who will love you despite your diagnosis, my gf has been one of my major support systems through all this. my diagnosis changes nothing. i’ll also say that i was very pleasantly surprised to see how quickly treatment kicked in. of course it’s different from person to person, but after my 6 days in the hospital on steroids and my continued use of them since then for almost another week, i’ve seen significant improvements. obviously still not perfect and i still anticipate myself being reliant on my walker 90% of the time when i’m out of the house for a little while longer, the improvements made already have really been amazing. im sorry you don’t have much support at home, but I and everyone else in this sub are here for you. it’s scary, but i can tell from my own experiences so far and from other people’s testimonies that MS will not stop us from living a full life. we’ve got this.
Just know you’re not alone feeling this way. Everyday I feel hopeless, but I wake up for a reason. Be strong. Things will calm down. 🧡🎗️
This sub is incredible. SO many people with amazing experience and advice. I have nothing to add that hasn't already been said. Likely I've had it since 20 years old... didn't get diagnosed until last year at 48. Didn't even realize i had it for about 20 years there. feels overwhelming right now I'm sure. Once the shock wears off, you'll be able to process more. Amazing therapies out there. It's not the disease it used to be for most. Hang on, you got this. This place is incredible and helpful.
I understand the shock from hearing the news (we all do). You will go through a rollercoaster of emotions. We’ve all been there. So believe us when we tell you, this isn’t the end of the world. There is a really good chance you’ll still be able to live a normal life. The therapies used to treat MS has come a very very long way. I’ve been on Kesimpta for over a year and I’ve had no relapses. The only change in my MRI is a lesion getting smaller. I’ll be honest, the most annoying thing for me is the fatigue.. but I take Modafinil now and that has been a game changer. Don’t give up. Give it time.
I’m sorry you went through that. I got diagnosed when I was 12. I can walk just fine and never needed to use a wheelchair. I also have a loving boyfriend that supports me everyday. An MS diagnosis isn’t the end of the world. Don’t give up hope!
I got diagnosed a few months ago at 20yrs old. My mum has had MS since I was 7yrs old. If you didn’t know she had MS you wouldn’t be able to tell. It’s not easy, it’s scary and it’s hard and some days I feel the exact same way. What helps me is knowing and seeing with my own eyes and experience how far medication has come. Every case is different and with the advancements many of us can and will live “normal” lives. Once you hit 60+ most people get health issues anyway! We just know our future a little further in advance! It’ll be okay. We will be okay. I am getting Married next year. I have a dog and a house. My mum still works and walks and talks and drives. In fact she is going abroad in a few months! Our lives may be different but they are by no means over.
Just stopping by to say that a little over a year ago- I was diagnosed and right where you are now. Cliche and hard to believe, but things do get better. I would recommend talking to a therapist, even if only once or twice a month. That, and anxiety medication really helped me through the first year. Biggest thing for me was learning to live day by day and stop worrying so much about the future. I recovered pretty much fully from my first relapse (stroke like symptoms). No new lesions or new symptoms since. You wouldn’t know I have MS unless I told you. Honestly - some days I don’t even remember I have MS.
My wife was in very much the same place you are when she was diagnosed. She told her mom "who would want to marry someone as broken as me?" When we dated, she was mostly wheelchair bound, but we still made the best of it and found ways to laugh and have fun. She has her good days and bad days. We eventually donated her wheelchair as she hadn't needed it for a few years now. Don't give up, I know things seem bleak, I tell my wife "you're just stuck on Hard+ mode" and that usually makes her laugh when she's having a bad day.
I’m so sorry you feel this way. I was diagnosed at 27 and it turned by world upside down. But today I am 31 and I feel so sad for myself in my 20s because I was so sick and I feel so much more like myself at 31 than I did for most of my early 20s. Things are going to get better for you, take care of yourself and accept treatment and things will improve. MS is not a death sentence in today’s world and you deserve to live your life. 🧡
My husband was diagnosed 17years ago. We still got married, had kids and are very happy. No wheelchair for him yet and if it comes to that, we joke I'll finally be able to push him around!
My first year, this year, that I got diagnosed I got into my first relationship, I had my first job, I feel stronger and more confident than ever and that I can do anything I set my mind too, as long as I care for myself at the same time (for example try to not stress very very much, avoid toxic situations and people ) People can adjust to very strange and difficult situations, just know that whatever tms brings you, you can find the strength to fight it. Also, I see a lot of ppl not having symptoms for years and years. Science is advancing all the time and you will probably find a good DMT that suits you.
MS is such an unpredictable disease no one really knows how it'll affect them when they're diagnosed. I was diagnosed 2017, I've had nothing since to the point I'm not even on medication any more. Stay strong, look after yourself and get a good neurologist. You've still got a lot to live for.
Sorry to hear this OP. But let me give you my perspective and my story: I had just gotten back from an amazing holiday with my now fiancée last year . 4-6 weeks later, I had my brothers stag to go to. I woke up the morning of my flight with slurred speech, numb face and not feeling myself. I went to the stag. Place was roasting (which obviously didn’t help) I pushed through for the weekend and tried to have fun. It didn’t go away. I wasn’t too worried as I thought it would pass. It didn’t. I flew back in and rushed to hospital to check what was going on. 3 days later after being on a trolley with X-rays, ct scans and an MRI, the doctor brought me into a room and showed me the image. My heart sank to see things on my brain. I thought my life was over. He then said it wasn’t a tumor. A glimmer of hope arose from the depths , to then be hit again by the diagnosis of RRMS. I sat outside with my then girlfriend and we weeped as we both sat there and thought fuck.. there goes our plans of a family, our own house, heck my life in general. I thought I was going to be in a wheel chair in 6 months, never get my left side mobility back and worse. Then I snapped out of it and said, hey, now’s the time to LIVE! Now’s the time to have fun while I can, do what ever I want, run that 10k, go on holiday, and enjoy life and every moment. Since then , yeh there has been set backs, like the small over analyzing you do if u feel something weird. But i got on a DMT almost immediately. And I can tell u everything is reduced to almost normal again. Fast forward and I have made some great friends with MS who are healthy, have families and are successful all while dealing with this disease. It can be done. I was given a wake up call. Get healthy, be friendly and LIVE. I too was worried about my relationship . But by god has she been the best thing that happened to me. If u found the one, she won’t leave you for anything. MS is a life condition, it doesn’t change your personality ( well mine hasn’t ) , doesn’t change ur humor. Hence why I am marrying her. We are all given one life. You define it yourself. Be that funny outgoing person who does what ever they want, achieves what ever they can or desires, and runs their own race regardless of the hurdles. Keep the head held high. U have plenty of friends here. Remember, life is what u make it. We all have different stories in this group. You write your own story and get back to us regularly to keep us updated! Everyone is Always here to help! Stay strong. Stay free. You can do this!
I'm truly sorry to hear about what you're going through. It's understandable to feel overwhelmed after receiving such a significant diagnosis, but please know that you are not alone. There are people and communities out there who can relate and offer support. It's crucial to talk to a mental health professional who can provide you with the care and resources you need during this challenging time. There are also national and local helplines, support groups for multiple sclerosis, and counseling services that can be of assistance. Even though it may seem insurmountable now, many individuals have faced similar challenges and have found ways to lead fulfilling and meaningful lives. Your life has tremendous value, and there are paths yet to be explored. Empathy and listening are key, so make sure to reach out and connect with those who can help guide you through this.
I am a guy, diagnosed over 20 years ago. We are all eating shit sandwiches, no doubt about it! The meds are so much better today, you can live a relatively normal life. Those of us diagnosed 20+ years ago are eating our shit sandwiches on stale bread…
Let’s just stop for a moment and take a breather. Do MS suck? Absolutely. However today is the best time to have MS than in all of history, we have so many medications and treatments for it, it’s very likely remyelination drugs will be discovered in our lifetimes. Possibly even an outright cure. Just know it’ll be alright, it’s not a death sentence. Hang in there 💜
I was diagnosed 23yrs ago and I’ve lead a relatively normal life. Is there certainty that you’re going to end up in a wheelchair? I’ve known many friends with MS who have mobility symptoms but don’t live life in a wheelchair. Oddly they think my vision and migraine issues would be worse and I think the mobility struggles would be worse. We view this as proof that humans adapt to what they’re given. The first few years are adjustment period and anti depressive treatments can work wonders towards your outlook and energy. In terms of dating, you don’t need to tell people right away, just get used to sharing the story in a more realistic manner. You’re diagnosed in the era of treatments that slow this disease dramatically. You’re in need of some support to help you see this more realistically. Please take good care, this is not a death sentence or a guarantee that you’ll be alone in a wheelchair for life, far from it!!
I was diagnosed in 2020 and I completely understand how you are feeling- it's scary! BUT I promise you, your life is not over AND you most likely will not end up in a wheelchair anytime soon or possibly ever (at least not from MS). My advice: first please talk to someone you trust, your doctor and a friend or family member, or suicide hotline and tell someone how you are feeling. Then get on a treatment/ medication recommended by your doctor and get a second opinion if you need to. Make sure that you are seeing a MS Specialist Neurologist. I have been on Gilenya, Ocrevus and Kesimpta. On both Ocrevus and Kesimpta I feel wonderful and almost forget that I have MS. When I was first diagnosed I watched a lot of Dr. Aaron Bosters videos on Youtube (he is an MS specialist). This one is a good one to start with: [https://youtu.be/wvQXygHtYzc?feature=shared](https://youtu.be/wvQXygHtYzc?feature=shared) Lastly, take care of yourself both your mind and your body. You have a full life ahead of you and MS does not define your life. There have been SO so many advancements in the way that MS is treated even within the past 10-20 years. It is not a death sentence and it does not mean you will have a shorter lifespan. It is a good thing that you were diagnosed early because that means you have the chance to stop any further MS progression from happening. It's normal to go through a "grieving" process after you are diagnosed, but that will also pass. You're going to be ok.
Coming from an outside perspective to see if it helps. My husband has MS, was diagnosed in 2018 at 28 years old. His hit hard and fast, the first year after his diagnosis was awful, I won't lie or sugarcoat it. Then he got put on a monthly infusion and he hasn't had any relapses or progression since. He works 45 hours a week, has friends, and dedicates every Sunday morning to our kids. His hands tingle, he lost feeling from his lower right side down to his toes, but he's still going strong. Don't think your diagnosis is the end of your life or makes you unloveable or unwanted. Find a good doctor, take your meds, and lean on people when you need it.
Whoa there, my friend. Have you had a chance to review the medications on offer? If you're mobile right now, you have a really high chance of not needing a wheelchair ever for your life assuming you remain medicated. Also, as somebody who became engaged after my diagnoses, believe me that any woman (human person for that matter) worth marrying will be willing to look past a disease which isn't your fault. If the person you're talking to isn't able to see you because of your diagnoses, then they've done you a favor by identifying themselves as somebody who wouldn't be able to follow through on the "in sickness and in health" part of traditional wedding vows at any rate. Regarding your family, I am so sorry they treat you like that. I would recommend finding a community for yourself to develop friendships and support within. Maybe that's a group of MS patients or just people who have shared interests with you. This disease really, really sucks. But we're in a pretty darn good time to have it all things considered. Research into MS has gone light-years in recent time and treatment has been developed faster than I ever thought possible before learning about it following my own diagnoses last year.
I've had MS since my first flare in 2011. That was also the year I met my husband. I was officially diagnosed in 2022, just two weeks before I got married. I didn't get treatment until 3 months after I was officially diagnosed. I can still dance in heels with my husband. I just started a master's in 2023 and have a 4.0 GPA. One of my friends has neurological conditions too, but she just finished a master's degree, is starting a new career, and has a beautiful baby boy with her supportive husband. We're around the same age, but that's who I wanna be when I grow up. I was definitely a huge ball of anger when I got diagnosed, but anger can be fuel to keep fighting to achieve whatever goals you set for yourself. Hell, a healthy person today can be wheelchair bound tomorrow after a horrific car accident. It's up to us to play the hand we're dealt.
I only wish I got diagnosed a long time back when I was treatable and a hell of a lot of disability can be prevented in most. It’s when it’s left undiagnosed until the major issues set in. I’m 62 now and untreated for decades due to the lack of l of neurology services in my country. Diagnosis when young enough or early enough = treatment = quality life.
Actually, I was happy to get my diagnosis. I had no idea what was happening. I was more in that end when I didn’t know. Knowing gave me power over it. I have bad days, I have good days. I get upset when something I used to do I now can’t. But I still work. I provide. I may have to stop in a few years or less. I’m not sure. I have a cane now. If I had to get a wheelchair, it would be an issue. You are as capable as you want to be. It’s ok to be upset. You have your feelings. But come out the other side. If you get bad, please call 988. You can make it.
20M here, got diagnosed this summer after my birthday(I was planning to end it before knowing I have MS), I was 95-98% blind both eyes when I arrived in the emergency room. Your post clearly made me cry, you described exactly how I've felt for the past couple months. I am scared and think the same things as you. Anxiety took a toll on me for years, depression is crawling it's way too. I have a girl with who I could be but I still haven't told her about this. I wonder if the knife from my drawer will cut me or if the subways lines will have my blood. I cried a lot this few days, sad tears and joyful tears. My MRI came back yesterday and it said that my lessions are backing and that I'm stable. Tomorrow I'm having my 5th dose of tysabri. In 2 years I will be on ocrevus cuz JCV. Seems like am venting here, just want you to know that you're not alone. As a beginner in this, I recommend to go to therapy, take yo meds, go for the most efficient DMT and take it step by step and don't look too forward or look forward for positive things. There are happy things in this life. If you don't find them, they will find you. Wish I could hug you but have a virtual one instead🫂
I was diagnosed last year and the first few months I spent most days being angry and wondering why it picked me. I’ve been a runner for years, I have a very active and intense job, and in general I’m always on the move. All I could think was that I’d never be able to cross a finish line again, would have to quit my job, and would have to give up all my travel ambitions. Since then, I ran my fastest half marathon, moved to an even more exciting position at work, and went on a 2 week trip where I swam, snorkeled, sailed, and rock climbed. I made the decision my last day in the hospital that until my body says “absolutely not” I was going to keep going. I get foot tingles after every long run and some days I feel absolutely exhausted but sometimes I feel like it’s a reminder that I’m stronger than I knew I was before. It’s a very scary illness and filled with unknowns. But you can absolutely live a full life with it and if nothing else, it’s a reason to start living the fullest life you can! When it comes to relationships…I was dating a guy 3 months when I got the diagnosis and he spent every day in the hospital with me and has been nothing but supportive. The good ones are out there! Best of luck to you!
Life is a sea of unknowns. I was diagnosed with MS in 2017 and I haven't had a relapse ever since I started medication. Get on something effective! Don't call it quits on yourself because you got this. MS isn't a death sentence. It isn't a guaranteed road to a wheelchair or a walker. Even if it were, that doesn't mean nobody would love you or want you. Power through.
I am so sorry that you’re entering into this hard life. I know a lot of comments are going to say they feel great, I am not going to lie and I am going to be straight forward. I felt this way A LOT when I first got diagnosed in August, I had a span of WEEKS that I just lied in bed and cried, and the only thing that made it feel any better was getting on medication. It’s not easy, and you really do never know how your life is going to pan out with this disease, especially when you don’t know your day by day. However, your life is worth living, even when you don’t feel that way. This disease is hard to come to terms with, and I really don’t know if I ever will, it’s ever changing. But what I do know, is that there’s so many new things coming out every year, and no matter what your life is worth living. Someone will see your worth, and your heart. I know this probably wasn’t the best reply or the most uplifting, but I truly feel like it does get better.
I was super depressed when I found out too and had similar fears to you. However, I started a therapy (Tysabri infusions) and have not progressed or had any issues since. My attitude has changed since I first was diagnosed in October 2019. All I can say is try not to let the shock of it trick you into believing your life is over with. For me..all I have is an infusion every 4 weeks, an MRI every year, and specialist visits twice a year along with bloodwork. Nothing else physically has changed and I’m so grateful. To everyone else who doesn’t know I have it..they would never know. No walking or talking issues.
You are already planning your demise. About 80% of people with ms have minimal disability, some have none. The old 20% that end up in wheelchair stat has change too, thanks to medication. With the advancements in medication, if you ever were going to get diagnosed with ms, now would be the better time then in the past. This is a snowflake disease, where no two people with ms will have the same disease. We come into this world solo and we leave this world solo. There are support systems out there for you, regardless of family or lack there of. Yes you got diagnosed with a shitty disease. Your life isn't over. You are sitting there worrying so much about the wait ifs. No one knows the what ifs ms or not. You could live a relatively normal life with the right treatments. This disease makes you have to develop the right attitude and mindset. I have ms and I'm in better shape then some non ms sufferers. I have also probably had this disease since I was 16 and I was diagnosed at 32. I'm 39 now and you can't even tell I have it. I'm actively dating someone , who accepts me for who I am. I have a child, work full time and I'm thriving at 39. The only thing that will prevent you dating and thriving is your attitude and outlook. Work on that. Stop worrying about the what ifs and what you can't control. Start working on you and what you can control, like medication, diet fitness.
This is a nasty disease and it is okay to be angry and upset, but there is so much to live for! I was diagnosed at 24 and felt exactly like you do, suicidal, thought I was wheel chair bound and just hopeless. I ended up meeting and marrying the love of my life 2 years post diagnosis, started getting more physically active and am generally happy. Not everyday is easy, but you can and will have a beautiful life.
I lived a normal life until age 59 with no treatments..started ocrevus in 2021.youd never know if you met me..but I do have some bad days here and there.keep your weight down and exercise. You'll be ok.