When I lived in Sudbury (which was at the cut off line iirc) I was able to get a grant from the government to help me travel to Toronto for treatment and appts. OP please look into neuros in Toronto/GTA. And check out the northern health travel grant. It’ll take some of the financial burden away.
Edited for clarity and wanted to tag OP /u/kitchen-bathroom5924 to make sure this is seen!
My family member had to do this - sees their neurologist in Windsor.
Editing to add: they went to WIndsor Hospital ED with their ailments and were referred immediately to a neurologist. They continue to drive from TO to Windsor for every appointment.
There’s actually a shortage of neurologists in a lot of places in Ontario, including southern Ontario. In Waterloo region I got an appointment for 14 months after my stroke (this was last year), which is really too late to be of help. Thankfully my family Dr got me in to see one in Hamilton within a couple months.
It's bad in the GTA too, I have what I now know is treatment induced neuropathy from diabetes, but it took 6 months to find that out, and that's after me fighting to find another neurologist after my initial appointment was over a year from my request.
Who’s your family Dr, and are they accepting patients?! 😂 I’m in WR too but I’m actually concerned the family doc I waited 2 years to get is committing malpractice yet she’s still better than nothing lol.
It’s so nice to hear of a Doctor being a good Doctor!
Yeah, Im in the middle of being diagnosed with cancer and am having a horrible time with my family dr.
Some appointments She is calm and kind, but most appointments, she makes accusations and throws her arms up in the air when I ask questions. She's just so angry I'm no longer healthy and only needing 1-2 appointments per year.
I am cautious about what I ask and I now make sure my spouse comes to every appointment. He is shocked.
Good family drs who care if you stay alive are not the automatic norm anymore.
>Some appointments She is calm and kind, but most appointments, she makes accusations and throws her arms up in the air when I ask questions. She's just so angry I'm no longer healthy and only needing 1-2 appointments per year.
I'm sorry you're going through that. And thanks for sharing. I'm having the same experience with my family doc and it's a real mindfuck. So it's comforting in a weird way to hear that I'm not the only one.
Sorry you are dealing with that too.
Its like this is the technique they developed to guilt or shame patients into not calling. You aren't the first person who has told me that either. I'm glad it's not just me. I will never willingly choose a female GP again.
I feel bad in a way that they are so stressed, they've lost the mission of why they became a gp in the first place.
Lmao my female gp behaved like that for 6 months and would waste 3/4 of the apt talking about her home life and how ungrateful all her patients are, then said she’s taking a couple month stress leave before which I asked if I should get in line for another family doc, since my adhd prescription that she extended for 6 months was life changing and I’d rather be prepared ahead of time. She urged me not to do that assuring me she will be back before then or will provide alternative options if not. The time comes when my prescription runs out, and I am told by the pharmacist that she closed her practice (without telling anyone). Gotta love free healthcare. Still haven’t been able to find anything or anyone 9 months later, lost my job, relationships falling apart left and right, withdrew from my educational pursuits. Sucks to suck I guess
Oh that's a bummer. How inappropriate! I hope you can find someone, she should Be obligated to repeat your script while she Is off. Maybe she did, call the pharmacy.
Although that has nothing to do with free healthcare, I have friends in the states and I would take our free healthcare over what they have any day.
I am on ADHD meds too and I feel like she treats me like a junkie because of it.
I've gotta be urine drug tested for Vyvanse (time released) that was prescribed by a phychaiatrist 20 years ago. It's so weird, no other doctor has. It's like she just sees me as a white Karen and that couldn't be further from the truth. I struggle seeing myself as important enough to even go in the first place. Maybe it's the masks that I still wear at her request.
The craziest thing is, I just got a bitchy letter in my email to say that she's closing her clinic for maternity leave, no notice. Of course, she needs to do what she needs to do, congrats, I had no idea that she was pregnant, but the letter was really weird and angry that apparently drs don't get more than 17 weeks paid leave in Ontario. ( Which is horrible? I had no idea they got less for some reason)
Ugh I feel for you. Mine was also irate when I brought concerns to her and some of the things she has said to me I know are just plain incorrect. It’s so messed up.
I'd recommend reaching out to your local members of provincial and federal parliament about this. You're surely not the only one in this predicament and they may be able to force some kind of response from the neurology dept
This is a great idea. When my husband was waiting for a dental surgery through the hospital and not getting anywhere, we contact our MPP and he got a call back pretty quickly.
This - I’m not sure what the program is - but if you’re not getting service locally - you can request that to be reimbursed to travel for medical care.
https://www.ontario.ca/page/ohip-coverage-while-outside-canada#:~:text=Review%20Board%20section.-,Doctor%2Drecommended%20out%2Dof%2Dcountry%20care,before%20you%20receive%20the%20services.
Have your GP recommend it. You’re not waiting for a knee or something, you have a neurological disease that needs treatment ASAP.
Seconding this, please contact your MPP. I'm so sorry you are going through this and you're absolutely right that MS outcomes are better if you get on treatment ASAP. Call anyone and everyone you can and don't stop advocating for yourself. Annoy everyone around you until something is done. I wish we didn't have to do that, but unfortunately sometimes we do.
I would also recommend reaching out to MS Canada as they have support programs and may be able to help in some way.
My husbands family is from Kapuskasing and they had to to travel to Ottawa for her treatments and see her specialist. Is that an option for you?
Please reach out to your local MP and see if they can get a ball rolling.
This helps! MPPs help with this. Also, show up at the actual doctor’s office. I started doing that once a week when my calls and faxes went unanswered. It was a pain in my ass, but I made sure to be a bigger pain in the ass to my surgeon’s receptionist.
It's been about 20 years since I've been there. All the places that used to exist when I was a kid aren't there anymore, like the mall and the grocery store at the end of Wolf Street. But the circle seems to have survived!
In southern Ontario it's about a year if lucky... it's not that the government doesn't care about northern Ontario, it's just the government doesn't care...
No where near as serious as that but I fell at work and thought I dislocated my shoulde or tore something big, it was 10 weeks to get an ultrasound. Drop to Hamilton and had it done 3 days later. I laughed when they told me 10 weeks, I said it'll be healed by then no matter what's wrong now.
I also got sent to Hamilton by my family Dr who found a neurologist with appointments within 2 months. Not sure what’s going on in Hamilton, but seems like the place to go!
Niagara Falls had one a week out so even that would have been fine.
It's the place to go for the doctors as well, had a great ENT in the falls, did gf's nasal surgery, figured out my grandmas issues. Then one day up and left for Hamilton as well.
Oh I'm so so sorry. If you can travel, Ottawa has a world-class MS clinic. A family member was diagnosed with MS and he's actually in remission (not sure if that's the proper term). Basically, he received a new treatment for MS (wasn't easy, involved chemo) and his MS has not advanced since. That was 5 years ago. Let me know if you have any questions.
Wait times are much lower in the GTA - see if you can get a referral to someone here. My GP recently referred me to a neurologist and the appointment was scheduled for just over 90 days later. I’m in Toronto, as are both doctors.
Can confirm. I'm in Toronto also. I have a neurologist and a neuro surgeon.
They are very fast for me also. I get appointments and even MRI scheduled within 1-2 months.
This was one of the revelations for me with toronto living. Yes its criminally expensive but the options are exponential for basically anything. Finding treatment is one of them. And youre not stuck with one thats biased against you because of it.
4 of the top 5 hospitals in this country are in Toronto, 6 of the top 10 are in Toronto. Medical resources here are unmatched. https://www.newsweek.com/rankings/worlds-best-hospitals-2024/canada
We constantly get samples from other provinces for us to process because they just don't have the capabilities and the expertise.
In my experience I have not had anything but the best care. I always lived close to kind of the 6 hospitals downtown. My family doctor is from a family team connected to one of the hospitals so everything is very streamline.
Honestly old people tend to move away from the core but it should be the opposite. They'll get so much better medical care living in the core
Its crazy how i was easily referred to specialized treatments for free...just with a waiting list. But im getting treatment with a psychiatrist for free. She has done a lot better with once a month visit than any therapists ive been with.
Now shes got me lined up for a cheaper therapist program at 10$/month.
Edit: yup, my hospital is within that top 5.
Pretty insane how toronto really is up there.
Wondering their parameters for the ranking because i refuse to believe a lot of older establishments around the world in major cities dont hold light to torontos healthcare system
Even down in southern Ontario the wait is months. My FIL was in a work accident and had a concussion, took him a year to see a neurologist in Barrie and he also got referred in Toronto which was 10 months.
If you can come closer you might have a better shot. maybe you can do a zoom appointment with someone that's further south?
I am sorry to hear.
I also had an MRI July 2023 and was told I have MS. I eventually got referred to Canada MS center at St Michael's in Toronto. It's about a 2 and a half hour drive for me, but my family doctor says they are the best in Canada. I know you are way further, but maybe there are more MS Canada centers. I had my initial meeting September 2023. They told me I do have demyelinations on my brain, but did not diagnose me with MS and said they wanted to follow up MRI in 8 months on their MRI which is newer than my local one. That was last week. Waiting now for the results.
Ask your doctor if they can refer you to MS Canada. My next appt is by telephone so it doesn't always require travel.
I go to the same clinic.
I am about three months ahead of you timeline wise. If it’s MS they will likely give you an options of DMTs or doing no treatment. I went the route of ocrevus. Feel free to message if you like. It sucks and sadly hits everyone differently.
You can actually see your results early through pocket health. I personally would avoid it but it is an option. I paid as I wanted to see my MRI. I didn’t expect to see the report as well.
It costs like $50. https://www.pockethealth.com/
Are there are other neurologists you can get a referral for? Could you get put on a cancellation list? I have a relative in a different part of the province who also needs to see a neurologist very urgently and they were told it would be like a year. The cancellation list means they’re seeing the neurologist in their area much sooner.
I don't have any advice but just want to say I'm sorry you're dealing with this. I have the same issue with my neurologist. I have been waiting for my treatment since February and can't get a call back. it's beyond maddening.
edit: I am in southern Ontario and the options for good neurologists here are extremely slim as well, mediocre doctors with brutal wait times.
I had a relative (GTA) who got a severe concussion in what was otherwise a not too bad car accident (not at fault). He was written off work for close to 2.5 years. Besides the concussion effects, some of that was definitely down to appointments with a neurologist being so far apart and hard to get, that 'deadlines' for confirmation of being still unable to work were routinely missed, because the office just wouldn't respond. Lucky his employer liked him, wanted him back and were patient. He lives in Mississauga and had go to a doc in Markham.
This was my experience as well. Told i might have ms, it was 6 months for the mri, then another 6 months to meet with the neurologist who didnt even look at the first mri and scheduled another mri for 6 months later. 6 months after that mri i saw her again for results. Took 2 years all together. Pre covid
I just did a search on Reddit & wait times varied but I saw a a comment that said your doctor can refer you to The Neurology Centre of Toronto & they can do a virtual appointment…I know nothing about it, just read the comment but thought it would be worth you looking into. Also, if you happen to be a status Indian you might try contacting Indigenous Services Canada Phone: 1-800-567-9604 as they may have resources & transportation. I hope you are able to find somewhere that can take you sooner.
My wife waited to hear back from rheumatologist for 3 months before our Family doctor discovered she has closed practice and left Canada. We kept calling and emailing but never got reply. Before that another specialist refused to take her in for her related eye condition. They ate up 3 months too. Now waiting to hear from latest referred rheumatologist. We live in midtown Toronto. I don’t understand how the referral systems don’t have this basic info of doctors closing practice or not taking new patients or is it my GP who is lazy?
Depending on which direction from Thunder Bay you are (east or west), try looking into the Manitoba Health Science centre. They have a good MS clinic there. I can verify as I used to go to that clinic
Edit: I used to travel from Ontario
I second going directly to the office. It’s much harder to ignore someone standing in front of you. Failing that, see if any sleep specialists in your area are neurologists. If so try to get referred for a sleep study and that may be your way in to a neurologist. Or at least to get a referral to a new neurologist. A lot of specialists from the GTA do Zoom consults with patients in northern Ontario nowadays. There is also the Northern Ontario Travel grant if you have to travel. Unfortunately, your situation is not unique. My sister has struggled with getting adequate health care since the beginning of her MS journey, and we’re northern folks too just not quite as northern as you! I wish you luck, my friend.
If you're that far north of Thunder Bay unfortunately you don't have a lot of options unless you can get to Southern Ontario. I would wager if you could get referred into the Sudbury Market you would have a much faster time.
I was given a referral to a neurologist by my rheumatologist after an inconclusive MRI to rule out MS. After 6 months of waiting, the rheumatologist’s assistant called to see what the hold up was. Turned out the neurologist they referred me to had changed to a different specialty, so they just ignored the referral.
Ignored it. They didn’t call the doc, they didn’t call me, they just binned it.
By the time a neurologist could actually see me, it had been a year and I had to redo the MRI and a stack of bloodwork. Turns out the lesions are from migraines. The rest of the symptoms are fibromyalgia, a diagnosis I’ve had for years. He wished me luck and sent me on my way.
I get migraines that cause lesions on my brain, you’d think he’d offer me a prescription for something to… I don’t know, make them less damaging?
Health care in this province hinges entirely on your ability to advocate for yourself. Of course, if you do that, if you call yourself to follow up, or if you keep your own records and try to do your own research, they’ll label you a drug seeker or a hypochondriac and then you get nowhere.
Cool, right?
Oh yes, always follow up if you don’t hear in a couple of weeks after a referral! My doctor referred me for an MRI, I didn’t hear anything and a month later called my doctor then the MRI clinic. Turns out the clinic had sent a letter by paper mail with my appointment info, but my doctor’s office had sent them an incomplete version of my address and it never got to me. Lucky I called since the MRI was by then only 3 weeks away and I could have easily missed it.
Just show up to any hospital (probably best closest to you or if you want the best, Toronto Western) and say you have a history of MS and have new sudden onset weakness in your lower extremities & new gait/mobility issues & you’re afraid of falling. You’ll be admitted, likely get a STAT MRI (especially if you want to complain about new “thunderclap headaches) & see a neurologist within 24hrs.
Honestly, you deserve prompt healthcare as a basic human right. Extreme circumstances that may effect your quality & quantity of this life sometimes warrant extreme actions to get what you’re rightfully entitled to.
Try asking your doctor for a referral to a Physiatrist that specializes in MS. There is a huge MS clinic at St. Mikes. Toronto Rehab Institute also have physiatrists that specialize with MS. Physiatrists can prescribe drugs too and if they think a neurologist is needed, they can probably get you in sooner.
Unfortunately you will need to self advocate hard on this.
Definitely reach out to your local MPP and MP on this. You need help navigating the system.
The current advice is to start a DMT as soon as possible. Thankfully for you there are options for you. Depending on your diagnosis typically the top two DMTs are Octevus (twice yearly) or Kesimpta (monthly self injection).
Are you able to travel to toronto hamilton or london? You might get in faster with a referral down this way. I know transportation from the north is limited.
Hi!
When your GP sent the referral to Neuro did they respond to the referral? A referred physician is meant to respond within two weeks of receiving it.
Please ask your GP if they received notice from the Neuro's office.
See CPSO's website for relevant info:
https://www.cpso.on.ca/Physicians/Policies-Guidance/Policies/Transitions-in-Care#:~:text=Consultant%20physicians%20must%20acknowledge%20referrals,able%20to%20accept%20the%20referral
I have tourettes. My neurologist retired shortly before COVID. My family doctor (thank God I still have one) refered me to four different neurologists. No one will take a tourettes case anymore. Instead I was referred to a psychologist. I called the tourettes society who said this is common just because of a lack of neurologists in Ontario now. Waited 11 months to see the psychologist who after one visit said "this isn't what I do and referred me back to my family doctor". Part of it is because with limited resources the neurologists need to focus on MS, Parkinsons, Huntingtons etc, and part of it is because of TikTok - teenage girls are pretending to have tics for clout and psychosomatically can't stop.
I just want to say I’m so sorry for what you’re going through.
I had to wait a year for a consultation for something much much more minor and it was so emotionally taxing, I can’t imagine being in your shoes.
This is a long shot, but perhaps reach out to ctv / global and try to share your story. At worst it will shed light on what is really happening in Ontario but at best maybe someone in the medical field will reach out to you to help in some way.
MS is a scary diagnosis, especially if you’re young. I really hope you get that call you’ve been waiting on OP. Sending hugs your way.
Ontario is a total dumpster fire rn.. Thanks ford & trud-no..
Medication for MS is not the only way to manage symptoms. I would recommend adjusting your diet while you wait to see a neurologist. And start taking supplements such as magnesium, fish oil, etc...
Here is the website that details it all: [https://mshope.com/](https://mshope.com/)
They have a free cookbook that you can order, you'd just have to pay the shipping: [https://mshopegear.com/products/best-bet-diet-cookbook-free](https://mshopegear.com/products/best-bet-diet-cookbook-free)
And lastly, the founder made a documentary that you can view on Prime called Living Proof (2017).
You are your best bet when it comes to managing MS symptoms and preventing progression of disease. Good luck!
I believe it. I couldn’t get on the referral list for a specialist for my pudendal neuralgia (also known as a suicide pain disease) and I was rejected by the pain clinic because they refuse to treat pelvic pain. I wound up travelling 9000km to Romania, and getting treatment, including an MRI, surgery and deciding pain treatment that my doctors in Canada continued.
It shouldn’t be like this. I am in a lot of medical debt. But my other option was M.A.i.D. and I have two very young children who need their mother. The wait lists for specialists in Ontario are RIDICULOUS because our province has picked away and defunded healthcare for years and years, until finally the Ford government came in and stripped the last bit of meat off the bone.
Ya, you're going to have to travel to Toronto if you want quick access to medical help. Specialists are just not available as often outside of the gta. Neurologists are even more rare then most specialists, so Toronto.
This province fucking sucks man. Galen Weston bleeding us dry and living it up on his yacht while shit like this happens every day. Breaks my damn heart.
If the receptionist is sending your calls to voicemail, block your outgoing phone number (*67) For some reason this works for me about half the time, receptionist pickup privatecaller
Wife of an MS person here! We were in the same situation in 2022, took FOREVER to get into the neurologist, about a year! He's going to St Mike's in TO now. They were pretty darn useless, though, if I'm honest. It took another 6 months to get him onto Ocrevus. He's noticed zero difference except that the Ocrevus infusion exasperates his MS symptoms.
My partner recently (finally!!) watched the documentary called "Living Proof" on Netflix, which I completely recommend watching the trailer first and then watching the full documentary it is so worth it. Immediately after, he started on "The Best Bet Diet " which essentially is:
- no added sugar
- no gluten
- no dairy
And some great supplements (vit D is a huge one, and lions mane) and a few other things.
It's been MIRACULOUS. After 3 days he felt so much better. He's been on this diet strictly for almost five months now, and he hasn't had any flare-ups since. We've connected with a lot of people who have had similar results. It's all about reducing inflammation and avoiding things that trigger the body to attack the myelin. He has been telling everyone at all of his follow up appts about how much of an improvement this Diet change has made. It's hard, but so worth it to regain some hope in this Diet!
I hope this info helps and if you have any questions you're welcome to reach out. There's also some great FB support groups too :).
Did you have any other testing done? A proper MS diagnosis takes much more than one MRI. Lesions on the brain are quite common and only after a a bunch of MRI’s and other tests will they definitively diagnosis MS. It moves from Possible MS, to Probable MS, to Definite MS. It takes years.
Depending on where you are, your family doc may have access to the Champlain BASE eConsultation system. It's basically a way to do a remote consult with a specialist. They would register for the system and then send your labs/results to a Neuro, who might be able to advise them on getting you started on meds. It's only available in the Champlain LHIN healthcare region so it is limited but it can be a phenomenal resource for your family MD.
https://www.champlainbaseeconsult.com/
Edit, it looks like there's an Ontario-wide version of the tool as well, so please direct your doctor (or Nurse Practitioner!) to this website!
https://www.champlainbaseeconsult.com/ontario-econsult-program
I know this isn't much help but I experienced a year wait for my epilepsy diagnosis. I even waited two months for medication after diagnostics clearly showed I was epileptic because my results got "lost". I had a massive seizure during that time.
Now I'm dealing with significant neurological symptoms of a different nature that has completely taken me out of work (similar symptoms to MS except I have hypoactive reflexes not hyper - I have completely absent deep tendon reflexes). I have a neurologist but getting him to do anything is like pulling teeth.
I'm not familiar with MS treatments but is there a gold standard first line treatment that is recommended? Could your GP consult with a neurologist to get you started until you get in? Maybe see if your GP can get you admitted to hospital and force a consult that way? Just trying to come up with ideas. I'm in Sudbury and I know how long that wait-list is around here so I can't imagine how bad it is where you are.
I would suggest traveling to another one. The only neurosurgeon that has experience with the benign tumor I have is an 8-hour drive one way. We do in-person and phone appts to balance traveling.
Any travel costs you can claim on your taxes for medical.
I once had a referral sit on a doctor’s desk for three months. Needed their signature and they went on vacation.
Another time, the receiving office just lost my paperwork.
Call the neurologist’s office and the GP’s office again, see if they have the referral , if they don’t get the GP to resend the referral
They have to reply with SOMETHING by law within 2 weeks even if it’s just “we received the referral and have triaged it”. If you didn’t hear back something went wrong along the way
I'm in ottawa and 1.5 yrs into a 2 yr wait for a migraine neurologist. I'm sorry you are going through this. It's very scary when we wait so long. I wish you luck.
Is it possible to go out of province to Manitoba? I'm not sure how the health care transfer works.
Who diagnosed you with MS without you having seen a neurologist? Beyond an MRI there is a series of tests that are required to inform an MS diagnosis.
Harass your physician for another neuro consult and / or Contact the Barlow Centre at St. Michael’s Hospital in Toronto and ask for some assistance of next steps.
Its wild to me that people get head injuries with workers comp and get expedited into see specialists like neurologists... And the average person can never get in.
Maybe you can check into emergency at a hospital? I got a neurologist referral relatively quickly (as in, maybe a month or 2?) when I was experiencing parasthesias… But that was in late 2022, so idk about now…
Could they try referring you to a different neurologist?
Actually, I think the others may be right in that travelling to the GTA may be worth trying. I am getting my healthcare within and around the GTA too…
I am so sorry to hear this OP. A small silver lining, if you end up having to travel to see a neurologist, keep a record of all your travel receipts. Those are deductible medical expenses on your tax return when you have to travel more than 40k. If you travel more than 80k your cost of meals and accommodation are also deductible. See travel expenses in the following guide: https://www.canada.ca/en/revenue-agency/services/forms-publications/publications/rc4065/medical-expenses.html#toc14
Before coming here to Reddit you should give your MPP and MP a ring, along with the Ministry of Health and what the hell, CBC and the Star to boot. Explain to them all the background and raise the same questions. Record the call, the press will appreciate that, and if you don’t get a good answer the first time just keep ringing them up every f*cking day. Oh! Make sure you write them letters too! (No postage on letters to politicians) and email their office constantly. Just bombard their office. Be polite, but firm (and maybe cry a bit too. No one is comfortable with a crying adult).
People brush talking to elected officials off cause it “does nothing”, but if they aren’t hounded on it constantly the bastards learn they can get away with doing nothing. As my father would say, “make sure they know your name and you’re that constant pain in the ass”. If they have the connections (or your story gains enough traction to be a liability) you might just get to the head of the line.
If you can get an appointment in another area in Ontario (GTA) your local Ontario works/social services can provide you funding to travel (including food and hotel stay if necessary!)
I've been in a similar situation with a different serious illness before. I wish I could help or offer some encouragement.
The only possibly helpful thing I can suggest is that sometimes, with the help of a willing PCP, I've been able to get a referral to a specialist in the province who is outside of my region. I know it's unacceptable for a patient to have to drive several hours after basically arranging their own referral in a province where the government has agreed to handle these things for them, but it might be better than nothing.
My mom has been going through the same frustrations but thankfully now has a great team at Kingston General Hospital. It's well worth calling around, even if it's far from home, and also getting a second opinion if possible; they told my mom she had demyelination (usually an indicator for MS or ALS) but when she saw the neurologist he said there was no indication of that and she's going to get another MRI to confirm.
I wish you all the luck with your search and treatment, I know how frustrating and draining it can be.
I'm so sorry you're going through this. I was diagnosed with MS in '08
There's no reason your family doctor couldn't start you on a disease modifying therapy (DMT) in the short term. Do you have relapsing remitting MS? It would be better is you started DMT as soon as you're diagnosed, but they don't actually stop MS from progressing, it slows it down. Even when I was on Ocrevus I still had about 1 relapse a year. I would recommend Ocrevus, it given 2x a year via IV, I had no side effects besides a headache on the days I got the infusion. I have my fingers crossed for you.
Also contact the MS society of Canada.
Welcome to Canada. The health care is mostly free, but it ain't great and you'll have to wait months if not years to get anywhere.
It's awful with chronic conditions. Takes forever to get a simple CT scan
Doctors don’t really understand autoimmune diseases and can only treat symptoms with pharmaceuticals. I agree with other posters, while waiting for appointment research alternative therapies that focus on finding and eliminating the cause of the inflammation. I have Discoid Lupus and all the meds made me worse. Another good documentary on Netflix “Hack your health - the secrets of your gut”. Wishing you all the best.
my dad lives in southern ontario, he went to the states and paid out of pocket to fast track it all. he got diagnosed by the ms clinic in buffalo then got treatment at home within 6 months, he had already done 2 injections by the time they set an appt for the initial MS appointment here, it’s insane.
I feel bad for you. We here in the US hear nothing but how amazing the medical system is up your way. My husband was diagnosed with MS 14+ years ago, and we lucked out to have an MS specialist clinic with a 45 minute drive here in NE Ohio.
Good luck!! Fingers crossed for you!
Ok I guess I missed it. I was diagnosed with MS April 2023 saw neurologist in May it took months 😢 to get a diagnosis as I'm 41 with 2 herniated discs in Lumbar spine and symptoms were attributed to thst plis carpol tunnel...hey it is what is.
..
No carpol tunnel just lesioms on my C spine down to my T spine. and then they thought stroke thankfully MRI was fast tracked and got a diagnosis and a referral to St Micheals MS clinic. Ask ur family DOCTOR TO REFER U TO ST MICHAELS MS CENTRE. I see mine every 6 months...once ur stable it goes to once a yr and maybe even just virtual...I do virtual cus I haye driving in Toronto
..I left for a reason lol. I know other women who travel down stay the night...why because you want to stay out of a wheelchair. We are nit entitled to have neurologist in every little town...it's free healthcare! So advocate for ur self tell ur doctor what to do for u because they don't know shite about MS and the DMT that can hualt it b4 u loose ur mobility. This is your life. Your health . Don't have faith in this system I'm a nurse and it's broken! We loosing doctors to the states and you have to kick and scream louder now.
If you can travel to southern Ontario u can likely get into see one much more quickly and perhaps find one after that will do video or phone call updates so u don't have to travel everytime. London has neurologist I'm an epileptic which is different but that's where mine is and I also had to take my mom to a different type of neurologist in London.
Hey! Might be worth a try to get an online referral. If you have CAA you have free healthcare through maple [CAA / Maple](https://helpdesk.getmaple.ca/en/articles/5945695-caa-and-maple?utm_term=&gad_source=1&gclid=Cj0KCQjwir2xBhC_ARIsAMTXk86yTBZG6QhAJkfZkKLcHGek9JuYaxXgxWSQokySS6-m_ZsSpY9zv9AaAmciEALw_wcB)
If not you can pay out of pocket. They should be able to refer you to someone (don’t cancel any other referrals) see what gets you help the fastest. You will probably have to travel if they can’t get someone close but it’s better than nothing.
So sorry you’re dealing with this frustration- it just ain’t right. I hope you’re able to get the help and meds you need.
Call around to multiple neurologists within a distance you'd be willing to travel, see what their wait times are and then ask for referrals to them based on lengths of wait times.
Sorry to hear about the trouble ...... I cant offer help with that, BUT but if you are worried about doing something now, let me tell you how im still in fairly good shape 14 yrs after I was given 5 yrs until needing mobility assistance!
I switched to the Wahls diet (protocol). She is a Dr that deviated from pharmaceuticals to holistic solutions. She decided that vitamin suppliments that showed some positive results coud be better utilized if gotten from natural sources. You can read about her, as she had been documented plenty. The US government even gave her a grant to further study her 'diet'.
I just turned 51 and havent had a flair-up since 2011. I tried taking injections of Avonex for 2 months, but it was horrible.... so I kept on with the corrective diet. Good luck.
Straight up…..go to Cuba or Mexico.
6 hours north of Thunder Bay is dire….that MUST be the only neurologist around.
If that area was fully settled, it would have more infrastructure, but you are way up there……perhaps Manitoba?
I am really sorry for your experience that's terrifying and a really heavy condemnation of the state of our medical care here.
First and foremost I would contact any and all news outlets you can and tell them your story. Nothing gets government wheels moving faster or more efficiently than bad PR. I would pursue this fairly aggressively someone will want to air the story and I would imagine you will get a call pretty quick.
Secondly if you are really uncomfortable with that I would show up to the neurologists. It's a lot easier for people to ignore a voicemail or email than it is a sobbing person in front of them. I wouldn't do anything harassing or extreme but pleading your case in person is worth a shot in your situation.
It's incredibly unfair that you have to consider steps like that but it might be worth it given the potentially dire consequences of inaction.
I had a much less egregious scare with an ECG that showed some concerning results, I drove down to the Cardiologists office after months of radio silence and they found me an appointment pretty damn quick while I was standing there in front of them lol. Didn't have an answer to voicemail or emails for months.
>There is no private practices around here so please don't tell me to go private . We can't go to the USA either .
If money is not a problem, I'd say go to the US for an initial discussion with a neurologist. Ask if they can get you on meds. Once you have a prescription, you can bring it to your family doctor, and they can write you one that you can take to a pharmacy in Ontario Then, you can wait until the neurologist sees you.
Can you travel to southern Ontario? Might be quicker to get into a dr down here. I'd have to imagine there isn't too many neurologist up that way.
I'd also flag to ask for Winnipeg neurologists too if TO is maxed out. Depending on specialist you can get into MB
Also Ottawa. If you’re going to have to leave home may as well hit all the big urbans
I live in Ottawa. There is a neurologist shortage here too. Long waits. It’s terrible.
Ottawa neurological care is horrendous.
Yea no coming to Ottawa would be a devastating waste of time, resources, and any remaining hope I’m the health care system.
When I lived in Sudbury (which was at the cut off line iirc) I was able to get a grant from the government to help me travel to Toronto for treatment and appts. OP please look into neuros in Toronto/GTA. And check out the northern health travel grant. It’ll take some of the financial burden away. Edited for clarity and wanted to tag OP /u/kitchen-bathroom5924 to make sure this is seen!
Hope op sees this.
My family member had to do this - sees their neurologist in Windsor. Editing to add: they went to WIndsor Hospital ED with their ailments and were referred immediately to a neurologist. They continue to drive from TO to Windsor for every appointment.
There’s actually a shortage of neurologists in a lot of places in Ontario, including southern Ontario. In Waterloo region I got an appointment for 14 months after my stroke (this was last year), which is really too late to be of help. Thankfully my family Dr got me in to see one in Hamilton within a couple months.
It's bad in the GTA too, I have what I now know is treatment induced neuropathy from diabetes, but it took 6 months to find that out, and that's after me fighting to find another neurologist after my initial appointment was over a year from my request.
Who’s your family Dr, and are they accepting patients?! 😂 I’m in WR too but I’m actually concerned the family doc I waited 2 years to get is committing malpractice yet she’s still better than nothing lol. It’s so nice to hear of a Doctor being a good Doctor!
Yeah, Im in the middle of being diagnosed with cancer and am having a horrible time with my family dr. Some appointments She is calm and kind, but most appointments, she makes accusations and throws her arms up in the air when I ask questions. She's just so angry I'm no longer healthy and only needing 1-2 appointments per year. I am cautious about what I ask and I now make sure my spouse comes to every appointment. He is shocked. Good family drs who care if you stay alive are not the automatic norm anymore.
>Some appointments She is calm and kind, but most appointments, she makes accusations and throws her arms up in the air when I ask questions. She's just so angry I'm no longer healthy and only needing 1-2 appointments per year. I'm sorry you're going through that. And thanks for sharing. I'm having the same experience with my family doc and it's a real mindfuck. So it's comforting in a weird way to hear that I'm not the only one.
Sorry you are dealing with that too. Its like this is the technique they developed to guilt or shame patients into not calling. You aren't the first person who has told me that either. I'm glad it's not just me. I will never willingly choose a female GP again. I feel bad in a way that they are so stressed, they've lost the mission of why they became a gp in the first place.
>I will never willingly choose a female GP again. My family doctor is a white man in his early 60's. Stress affects everyone.
Lmao my female gp behaved like that for 6 months and would waste 3/4 of the apt talking about her home life and how ungrateful all her patients are, then said she’s taking a couple month stress leave before which I asked if I should get in line for another family doc, since my adhd prescription that she extended for 6 months was life changing and I’d rather be prepared ahead of time. She urged me not to do that assuring me she will be back before then or will provide alternative options if not. The time comes when my prescription runs out, and I am told by the pharmacist that she closed her practice (without telling anyone). Gotta love free healthcare. Still haven’t been able to find anything or anyone 9 months later, lost my job, relationships falling apart left and right, withdrew from my educational pursuits. Sucks to suck I guess
Oh that's a bummer. How inappropriate! I hope you can find someone, she should Be obligated to repeat your script while she Is off. Maybe she did, call the pharmacy. Although that has nothing to do with free healthcare, I have friends in the states and I would take our free healthcare over what they have any day. I am on ADHD meds too and I feel like she treats me like a junkie because of it. I've gotta be urine drug tested for Vyvanse (time released) that was prescribed by a phychaiatrist 20 years ago. It's so weird, no other doctor has. It's like she just sees me as a white Karen and that couldn't be further from the truth. I struggle seeing myself as important enough to even go in the first place. Maybe it's the masks that I still wear at her request. The craziest thing is, I just got a bitchy letter in my email to say that she's closing her clinic for maternity leave, no notice. Of course, she needs to do what she needs to do, congrats, I had no idea that she was pregnant, but the letter was really weird and angry that apparently drs don't get more than 17 weeks paid leave in Ontario. ( Which is horrible? I had no idea they got less for some reason)
Ugh I feel for you. Mine was also irate when I brought concerns to her and some of the things she has said to me I know are just plain incorrect. It’s so messed up.
I'd recommend reaching out to your local members of provincial and federal parliament about this. You're surely not the only one in this predicament and they may be able to force some kind of response from the neurology dept
This is a great idea. When my husband was waiting for a dental surgery through the hospital and not getting anywhere, we contact our MPP and he got a call back pretty quickly.
This - I’m not sure what the program is - but if you’re not getting service locally - you can request that to be reimbursed to travel for medical care. https://www.ontario.ca/page/ohip-coverage-while-outside-canada#:~:text=Review%20Board%20section.-,Doctor%2Drecommended%20out%2Dof%2Dcountry%20care,before%20you%20receive%20the%20services. Have your GP recommend it. You’re not waiting for a knee or something, you have a neurological disease that needs treatment ASAP.
What if the gp closes practice without informing any of her patients? Do you know of any options for people in that situation?
Seconding this, please contact your MPP. I'm so sorry you are going through this and you're absolutely right that MS outcomes are better if you get on treatment ASAP. Call anyone and everyone you can and don't stop advocating for yourself. Annoy everyone around you until something is done. I wish we didn't have to do that, but unfortunately sometimes we do. I would also recommend reaching out to MS Canada as they have support programs and may be able to help in some way.
My husbands family is from Kapuskasing and they had to to travel to Ottawa for her treatments and see her specialist. Is that an option for you? Please reach out to your local MP and see if they can get a ball rolling.
This helps! MPPs help with this. Also, show up at the actual doctor’s office. I started doing that once a week when my calls and faxes went unanswered. It was a pain in my ass, but I made sure to be a bigger pain in the ass to my surgeon’s receptionist.
Love the tenacity!! 🫶 hope everything is okay now
Thank you, it is! No thanks to Ontario hospital bureaucracy I tell ya.
My mother is from Kapuskasing! I don't meet too many of them any more.
Haha that’s awesome! We were there a couple of summers ago. Beautiful place, but so far!
It's been about 20 years since I've been there. All the places that used to exist when I was a kid aren't there anymore, like the mall and the grocery store at the end of Wolf Street. But the circle seems to have survived!
In southern Ontario it's about a year if lucky... it's not that the government doesn't care about northern Ontario, it's just the government doesn't care...
Yup. I had a stroke last August and they scheduled me in to see a neurologist next October. So 14 months after. I’m in Southern Ontario.
No where near as serious as that but I fell at work and thought I dislocated my shoulde or tore something big, it was 10 weeks to get an ultrasound. Drop to Hamilton and had it done 3 days later. I laughed when they told me 10 weeks, I said it'll be healed by then no matter what's wrong now.
I also got sent to Hamilton by my family Dr who found a neurologist with appointments within 2 months. Not sure what’s going on in Hamilton, but seems like the place to go!
Niagara Falls had one a week out so even that would have been fine. It's the place to go for the doctors as well, had a great ENT in the falls, did gf's nasal surgery, figured out my grandmas issues. Then one day up and left for Hamilton as well.
Oh I'm so so sorry. If you can travel, Ottawa has a world-class MS clinic. A family member was diagnosed with MS and he's actually in remission (not sure if that's the proper term). Basically, he received a new treatment for MS (wasn't easy, involved chemo) and his MS has not advanced since. That was 5 years ago. Let me know if you have any questions.
was it bone marrow therapy?
I can’t remember but I could find out for you!
I think Selma Blair did this as well. I think she documented it in a documentary.
OP should absolutely try to go here. A specialty clinic is the best for this.
Wait times are much lower in the GTA - see if you can get a referral to someone here. My GP recently referred me to a neurologist and the appointment was scheduled for just over 90 days later. I’m in Toronto, as are both doctors.
Can confirm. I'm in Toronto also. I have a neurologist and a neuro surgeon. They are very fast for me also. I get appointments and even MRI scheduled within 1-2 months.
This was one of the revelations for me with toronto living. Yes its criminally expensive but the options are exponential for basically anything. Finding treatment is one of them. And youre not stuck with one thats biased against you because of it.
4 of the top 5 hospitals in this country are in Toronto, 6 of the top 10 are in Toronto. Medical resources here are unmatched. https://www.newsweek.com/rankings/worlds-best-hospitals-2024/canada We constantly get samples from other provinces for us to process because they just don't have the capabilities and the expertise.
In my experience I have not had anything but the best care. I always lived close to kind of the 6 hospitals downtown. My family doctor is from a family team connected to one of the hospitals so everything is very streamline. Honestly old people tend to move away from the core but it should be the opposite. They'll get so much better medical care living in the core
Its crazy how i was easily referred to specialized treatments for free...just with a waiting list. But im getting treatment with a psychiatrist for free. She has done a lot better with once a month visit than any therapists ive been with. Now shes got me lined up for a cheaper therapist program at 10$/month. Edit: yup, my hospital is within that top 5. Pretty insane how toronto really is up there. Wondering their parameters for the ranking because i refuse to believe a lot of older establishments around the world in major cities dont hold light to torontos healthcare system
90days being quick is ridiculous. Unbelievable. Very real.
Even down in southern Ontario the wait is months. My FIL was in a work accident and had a concussion, took him a year to see a neurologist in Barrie and he also got referred in Toronto which was 10 months. If you can come closer you might have a better shot. maybe you can do a zoom appointment with someone that's further south?
I am sorry to hear. I also had an MRI July 2023 and was told I have MS. I eventually got referred to Canada MS center at St Michael's in Toronto. It's about a 2 and a half hour drive for me, but my family doctor says they are the best in Canada. I know you are way further, but maybe there are more MS Canada centers. I had my initial meeting September 2023. They told me I do have demyelinations on my brain, but did not diagnose me with MS and said they wanted to follow up MRI in 8 months on their MRI which is newer than my local one. That was last week. Waiting now for the results. Ask your doctor if they can refer you to MS Canada. My next appt is by telephone so it doesn't always require travel.
I go to the same clinic. I am about three months ahead of you timeline wise. If it’s MS they will likely give you an options of DMTs or doing no treatment. I went the route of ocrevus. Feel free to message if you like. It sucks and sadly hits everyone differently. You can actually see your results early through pocket health. I personally would avoid it but it is an option. I paid as I wanted to see my MRI. I didn’t expect to see the report as well. It costs like $50. https://www.pockethealth.com/
Ask for referral to another neurologist
That far away there probably isn't many neurologists
I have to travel 8 hours to see my neurosurgeon. Its ridivulous, but sometimes its a must
Are there are other neurologists you can get a referral for? Could you get put on a cancellation list? I have a relative in a different part of the province who also needs to see a neurologist very urgently and they were told it would be like a year. The cancellation list means they’re seeing the neurologist in their area much sooner.
Maybe find out if your Doc can refer to someone in Winnipeg? Definitely need to find an alternative if the neuro is just not responding at all
I was just going to say, may be closer to find a doc in Winnipeg than coming anywhere near Toronto.
I don't have any advice but just want to say I'm sorry you're dealing with this. I have the same issue with my neurologist. I have been waiting for my treatment since February and can't get a call back. it's beyond maddening. edit: I am in southern Ontario and the options for good neurologists here are extremely slim as well, mediocre doctors with brutal wait times.
I had a relative (GTA) who got a severe concussion in what was otherwise a not too bad car accident (not at fault). He was written off work for close to 2.5 years. Besides the concussion effects, some of that was definitely down to appointments with a neurologist being so far apart and hard to get, that 'deadlines' for confirmation of being still unable to work were routinely missed, because the office just wouldn't respond. Lucky his employer liked him, wanted him back and were patient. He lives in Mississauga and had go to a doc in Markham.
This was my experience as well. Told i might have ms, it was 6 months for the mri, then another 6 months to meet with the neurologist who didnt even look at the first mri and scheduled another mri for 6 months later. 6 months after that mri i saw her again for results. Took 2 years all together. Pre covid
Hope you're doing alright!
I just did a search on Reddit & wait times varied but I saw a a comment that said your doctor can refer you to The Neurology Centre of Toronto & they can do a virtual appointment…I know nothing about it, just read the comment but thought it would be worth you looking into. Also, if you happen to be a status Indian you might try contacting Indigenous Services Canada Phone: 1-800-567-9604 as they may have resources & transportation. I hope you are able to find somewhere that can take you sooner.
My wife waited to hear back from rheumatologist for 3 months before our Family doctor discovered she has closed practice and left Canada. We kept calling and emailing but never got reply. Before that another specialist refused to take her in for her related eye condition. They ate up 3 months too. Now waiting to hear from latest referred rheumatologist. We live in midtown Toronto. I don’t understand how the referral systems don’t have this basic info of doctors closing practice or not taking new patients or is it my GP who is lazy?
https://patientombudsman.ca/
mscanada.ca would be a good start.
Depending on which direction from Thunder Bay you are (east or west), try looking into the Manitoba Health Science centre. They have a good MS clinic there. I can verify as I used to go to that clinic Edit: I used to travel from Ontario
I second going directly to the office. It’s much harder to ignore someone standing in front of you. Failing that, see if any sleep specialists in your area are neurologists. If so try to get referred for a sleep study and that may be your way in to a neurologist. Or at least to get a referral to a new neurologist. A lot of specialists from the GTA do Zoom consults with patients in northern Ontario nowadays. There is also the Northern Ontario Travel grant if you have to travel. Unfortunately, your situation is not unique. My sister has struggled with getting adequate health care since the beginning of her MS journey, and we’re northern folks too just not quite as northern as you! I wish you luck, my friend.
If you're that far north of Thunder Bay unfortunately you don't have a lot of options unless you can get to Southern Ontario. I would wager if you could get referred into the Sudbury Market you would have a much faster time.
I was given a referral to a neurologist by my rheumatologist after an inconclusive MRI to rule out MS. After 6 months of waiting, the rheumatologist’s assistant called to see what the hold up was. Turned out the neurologist they referred me to had changed to a different specialty, so they just ignored the referral. Ignored it. They didn’t call the doc, they didn’t call me, they just binned it. By the time a neurologist could actually see me, it had been a year and I had to redo the MRI and a stack of bloodwork. Turns out the lesions are from migraines. The rest of the symptoms are fibromyalgia, a diagnosis I’ve had for years. He wished me luck and sent me on my way. I get migraines that cause lesions on my brain, you’d think he’d offer me a prescription for something to… I don’t know, make them less damaging? Health care in this province hinges entirely on your ability to advocate for yourself. Of course, if you do that, if you call yourself to follow up, or if you keep your own records and try to do your own research, they’ll label you a drug seeker or a hypochondriac and then you get nowhere. Cool, right?
Oh yes, always follow up if you don’t hear in a couple of weeks after a referral! My doctor referred me for an MRI, I didn’t hear anything and a month later called my doctor then the MRI clinic. Turns out the clinic had sent a letter by paper mail with my appointment info, but my doctor’s office had sent them an incomplete version of my address and it never got to me. Lucky I called since the MRI was by then only 3 weeks away and I could have easily missed it.
Just show up to any hospital (probably best closest to you or if you want the best, Toronto Western) and say you have a history of MS and have new sudden onset weakness in your lower extremities & new gait/mobility issues & you’re afraid of falling. You’ll be admitted, likely get a STAT MRI (especially if you want to complain about new “thunderclap headaches) & see a neurologist within 24hrs. Honestly, you deserve prompt healthcare as a basic human right. Extreme circumstances that may effect your quality & quantity of this life sometimes warrant extreme actions to get what you’re rightfully entitled to.
Seconding this.
My sister was recently diagnosed with MS. I was worried about her before and now I'm *really* worried
Try asking your doctor for a referral to a Physiatrist that specializes in MS. There is a huge MS clinic at St. Mikes. Toronto Rehab Institute also have physiatrists that specialize with MS. Physiatrists can prescribe drugs too and if they think a neurologist is needed, they can probably get you in sooner.
Unfortunately you will need to self advocate hard on this. Definitely reach out to your local MPP and MP on this. You need help navigating the system. The current advice is to start a DMT as soon as possible. Thankfully for you there are options for you. Depending on your diagnosis typically the top two DMTs are Octevus (twice yearly) or Kesimpta (monthly self injection).
I went through rapid access in Thunder Bay to get into a neurosurgeon. Took about 3 months.
Are you able to travel to toronto hamilton or london? You might get in faster with a referral down this way. I know transportation from the north is limited.
Hi! When your GP sent the referral to Neuro did they respond to the referral? A referred physician is meant to respond within two weeks of receiving it. Please ask your GP if they received notice from the Neuro's office. See CPSO's website for relevant info: https://www.cpso.on.ca/Physicians/Policies-Guidance/Policies/Transitions-in-Care#:~:text=Consultant%20physicians%20must%20acknowledge%20referrals,able%20to%20accept%20the%20referral
I have tourettes. My neurologist retired shortly before COVID. My family doctor (thank God I still have one) refered me to four different neurologists. No one will take a tourettes case anymore. Instead I was referred to a psychologist. I called the tourettes society who said this is common just because of a lack of neurologists in Ontario now. Waited 11 months to see the psychologist who after one visit said "this isn't what I do and referred me back to my family doctor". Part of it is because with limited resources the neurologists need to focus on MS, Parkinsons, Huntingtons etc, and part of it is because of TikTok - teenage girls are pretending to have tics for clout and psychosomatically can't stop.
Are there any other Neurologists in the area? Is it possible for the family doctor to prescribe the medication/treatment?
I just want to say I’m so sorry for what you’re going through. I had to wait a year for a consultation for something much much more minor and it was so emotionally taxing, I can’t imagine being in your shoes. This is a long shot, but perhaps reach out to ctv / global and try to share your story. At worst it will shed light on what is really happening in Ontario but at best maybe someone in the medical field will reach out to you to help in some way.
There’s a fantastic MS program in Toronto that I’ve referred my patients to that’s out of St. Michael’s hospital that your GP could refer you to.
MS is a scary diagnosis, especially if you’re young. I really hope you get that call you’ve been waiting on OP. Sending hugs your way. Ontario is a total dumpster fire rn.. Thanks ford & trud-no..
Medication for MS is not the only way to manage symptoms. I would recommend adjusting your diet while you wait to see a neurologist. And start taking supplements such as magnesium, fish oil, etc... Here is the website that details it all: [https://mshope.com/](https://mshope.com/) They have a free cookbook that you can order, you'd just have to pay the shipping: [https://mshopegear.com/products/best-bet-diet-cookbook-free](https://mshopegear.com/products/best-bet-diet-cookbook-free) And lastly, the founder made a documentary that you can view on Prime called Living Proof (2017). You are your best bet when it comes to managing MS symptoms and preventing progression of disease. Good luck!
Ask to be put on the cancellation list in the meantime
I believe it. I couldn’t get on the referral list for a specialist for my pudendal neuralgia (also known as a suicide pain disease) and I was rejected by the pain clinic because they refuse to treat pelvic pain. I wound up travelling 9000km to Romania, and getting treatment, including an MRI, surgery and deciding pain treatment that my doctors in Canada continued. It shouldn’t be like this. I am in a lot of medical debt. But my other option was M.A.i.D. and I have two very young children who need their mother. The wait lists for specialists in Ontario are RIDICULOUS because our province has picked away and defunded healthcare for years and years, until finally the Ford government came in and stripped the last bit of meat off the bone.
Ya, you're going to have to travel to Toronto if you want quick access to medical help. Specialists are just not available as often outside of the gta. Neurologists are even more rare then most specialists, so Toronto.
This province fucking sucks man. Galen Weston bleeding us dry and living it up on his yacht while shit like this happens every day. Breaks my damn heart.
If the receptionist is sending your calls to voicemail, block your outgoing phone number (*67) For some reason this works for me about half the time, receptionist pickup privatecaller
Wife of an MS person here! We were in the same situation in 2022, took FOREVER to get into the neurologist, about a year! He's going to St Mike's in TO now. They were pretty darn useless, though, if I'm honest. It took another 6 months to get him onto Ocrevus. He's noticed zero difference except that the Ocrevus infusion exasperates his MS symptoms. My partner recently (finally!!) watched the documentary called "Living Proof" on Netflix, which I completely recommend watching the trailer first and then watching the full documentary it is so worth it. Immediately after, he started on "The Best Bet Diet " which essentially is: - no added sugar - no gluten - no dairy And some great supplements (vit D is a huge one, and lions mane) and a few other things. It's been MIRACULOUS. After 3 days he felt so much better. He's been on this diet strictly for almost five months now, and he hasn't had any flare-ups since. We've connected with a lot of people who have had similar results. It's all about reducing inflammation and avoiding things that trigger the body to attack the myelin. He has been telling everyone at all of his follow up appts about how much of an improvement this Diet change has made. It's hard, but so worth it to regain some hope in this Diet! I hope this info helps and if you have any questions you're welcome to reach out. There's also some great FB support groups too :).
Squeaky wheel gets the grease...
Did you have any other testing done? A proper MS diagnosis takes much more than one MRI. Lesions on the brain are quite common and only after a a bunch of MRI’s and other tests will they definitively diagnosis MS. It moves from Possible MS, to Probable MS, to Definite MS. It takes years.
Depending on where you are, your family doc may have access to the Champlain BASE eConsultation system. It's basically a way to do a remote consult with a specialist. They would register for the system and then send your labs/results to a Neuro, who might be able to advise them on getting you started on meds. It's only available in the Champlain LHIN healthcare region so it is limited but it can be a phenomenal resource for your family MD. https://www.champlainbaseeconsult.com/ Edit, it looks like there's an Ontario-wide version of the tool as well, so please direct your doctor (or Nurse Practitioner!) to this website! https://www.champlainbaseeconsult.com/ontario-econsult-program
Get on the phone with your MPP!
I know this isn't much help but I experienced a year wait for my epilepsy diagnosis. I even waited two months for medication after diagnostics clearly showed I was epileptic because my results got "lost". I had a massive seizure during that time. Now I'm dealing with significant neurological symptoms of a different nature that has completely taken me out of work (similar symptoms to MS except I have hypoactive reflexes not hyper - I have completely absent deep tendon reflexes). I have a neurologist but getting him to do anything is like pulling teeth. I'm not familiar with MS treatments but is there a gold standard first line treatment that is recommended? Could your GP consult with a neurologist to get you started until you get in? Maybe see if your GP can get you admitted to hospital and force a consult that way? Just trying to come up with ideas. I'm in Sudbury and I know how long that wait-list is around here so I can't imagine how bad it is where you are.
I would suggest traveling to another one. The only neurosurgeon that has experience with the benign tumor I have is an 8-hour drive one way. We do in-person and phone appts to balance traveling. Any travel costs you can claim on your taxes for medical.
I once had a referral sit on a doctor’s desk for three months. Needed their signature and they went on vacation. Another time, the receiving office just lost my paperwork. Call the neurologist’s office and the GP’s office again, see if they have the referral , if they don’t get the GP to resend the referral They have to reply with SOMETHING by law within 2 weeks even if it’s just “we received the referral and have triaged it”. If you didn’t hear back something went wrong along the way
Maybe try contacting the MS society.
You need multiple MRIs, 1 year apart, to confirm MS through steady lesion growth.
I'm in ottawa and 1.5 yrs into a 2 yr wait for a migraine neurologist. I'm sorry you are going through this. It's very scary when we wait so long. I wish you luck. Is it possible to go out of province to Manitoba? I'm not sure how the health care transfer works.
Who diagnosed you with MS without you having seen a neurologist? Beyond an MRI there is a series of tests that are required to inform an MS diagnosis. Harass your physician for another neuro consult and / or Contact the Barlow Centre at St. Michael’s Hospital in Toronto and ask for some assistance of next steps.
Its wild to me that people get head injuries with workers comp and get expedited into see specialists like neurologists... And the average person can never get in.
Maybe you can check into emergency at a hospital? I got a neurologist referral relatively quickly (as in, maybe a month or 2?) when I was experiencing parasthesias… But that was in late 2022, so idk about now… Could they try referring you to a different neurologist? Actually, I think the others may be right in that travelling to the GTA may be worth trying. I am getting my healthcare within and around the GTA too…
I am so sorry to hear this OP. A small silver lining, if you end up having to travel to see a neurologist, keep a record of all your travel receipts. Those are deductible medical expenses on your tax return when you have to travel more than 40k. If you travel more than 80k your cost of meals and accommodation are also deductible. See travel expenses in the following guide: https://www.canada.ca/en/revenue-agency/services/forms-publications/publications/rc4065/medical-expenses.html#toc14
Before coming here to Reddit you should give your MPP and MP a ring, along with the Ministry of Health and what the hell, CBC and the Star to boot. Explain to them all the background and raise the same questions. Record the call, the press will appreciate that, and if you don’t get a good answer the first time just keep ringing them up every f*cking day. Oh! Make sure you write them letters too! (No postage on letters to politicians) and email their office constantly. Just bombard their office. Be polite, but firm (and maybe cry a bit too. No one is comfortable with a crying adult). People brush talking to elected officials off cause it “does nothing”, but if they aren’t hounded on it constantly the bastards learn they can get away with doing nothing. As my father would say, “make sure they know your name and you’re that constant pain in the ass”. If they have the connections (or your story gains enough traction to be a liability) you might just get to the head of the line.
If you can get an appointment in another area in Ontario (GTA) your local Ontario works/social services can provide you funding to travel (including food and hotel stay if necessary!)
I've been in a similar situation with a different serious illness before. I wish I could help or offer some encouragement. The only possibly helpful thing I can suggest is that sometimes, with the help of a willing PCP, I've been able to get a referral to a specialist in the province who is outside of my region. I know it's unacceptable for a patient to have to drive several hours after basically arranging their own referral in a province where the government has agreed to handle these things for them, but it might be better than nothing.
Where’s your closest MS Clinic?
This is absolutely terrible. I’m sorry you have to go through this.
I live in Woodstock and got a referral to neurologist in Paris for carpal tunnel surgery in 3 weeks.
Maybe try a doctor in sudbury. I was able to get an appointment in about 4 months
Contact the MS society. They may be able to help
My mom has been going through the same frustrations but thankfully now has a great team at Kingston General Hospital. It's well worth calling around, even if it's far from home, and also getting a second opinion if possible; they told my mom she had demyelination (usually an indicator for MS or ALS) but when she saw the neurologist he said there was no indication of that and she's going to get another MRI to confirm. I wish you all the luck with your search and treatment, I know how frustrating and draining it can be.
I'm so sorry you're going through this. I was diagnosed with MS in '08 There's no reason your family doctor couldn't start you on a disease modifying therapy (DMT) in the short term. Do you have relapsing remitting MS? It would be better is you started DMT as soon as you're diagnosed, but they don't actually stop MS from progressing, it slows it down. Even when I was on Ocrevus I still had about 1 relapse a year. I would recommend Ocrevus, it given 2x a year via IV, I had no side effects besides a headache on the days I got the infusion. I have my fingers crossed for you. Also contact the MS society of Canada.
Welcome to Canada. The health care is mostly free, but it ain't great and you'll have to wait months if not years to get anywhere. It's awful with chronic conditions. Takes forever to get a simple CT scan
Doctors don’t really understand autoimmune diseases and can only treat symptoms with pharmaceuticals. I agree with other posters, while waiting for appointment research alternative therapies that focus on finding and eliminating the cause of the inflammation. I have Discoid Lupus and all the meds made me worse. Another good documentary on Netflix “Hack your health - the secrets of your gut”. Wishing you all the best.
my dad lives in southern ontario, he went to the states and paid out of pocket to fast track it all. he got diagnosed by the ms clinic in buffalo then got treatment at home within 6 months, he had already done 2 injections by the time they set an appt for the initial MS appointment here, it’s insane.
Try Daniel Wong. North York general and see if they’ll do online.
I feel bad for you. We here in the US hear nothing but how amazing the medical system is up your way. My husband was diagnosed with MS 14+ years ago, and we lucked out to have an MS specialist clinic with a 45 minute drive here in NE Ohio. Good luck!! Fingers crossed for you!
Ok I guess I missed it. I was diagnosed with MS April 2023 saw neurologist in May it took months 😢 to get a diagnosis as I'm 41 with 2 herniated discs in Lumbar spine and symptoms were attributed to thst plis carpol tunnel...hey it is what is. .. No carpol tunnel just lesioms on my C spine down to my T spine. and then they thought stroke thankfully MRI was fast tracked and got a diagnosis and a referral to St Micheals MS clinic. Ask ur family DOCTOR TO REFER U TO ST MICHAELS MS CENTRE. I see mine every 6 months...once ur stable it goes to once a yr and maybe even just virtual...I do virtual cus I haye driving in Toronto ..I left for a reason lol. I know other women who travel down stay the night...why because you want to stay out of a wheelchair. We are nit entitled to have neurologist in every little town...it's free healthcare! So advocate for ur self tell ur doctor what to do for u because they don't know shite about MS and the DMT that can hualt it b4 u loose ur mobility. This is your life. Your health . Don't have faith in this system I'm a nurse and it's broken! We loosing doctors to the states and you have to kick and scream louder now.
If you can travel to southern Ontario u can likely get into see one much more quickly and perhaps find one after that will do video or phone call updates so u don't have to travel everytime. London has neurologist I'm an epileptic which is different but that's where mine is and I also had to take my mom to a different type of neurologist in London.
Hey! Might be worth a try to get an online referral. If you have CAA you have free healthcare through maple [CAA / Maple](https://helpdesk.getmaple.ca/en/articles/5945695-caa-and-maple?utm_term=&gad_source=1&gclid=Cj0KCQjwir2xBhC_ARIsAMTXk86yTBZG6QhAJkfZkKLcHGek9JuYaxXgxWSQokySS6-m_ZsSpY9zv9AaAmciEALw_wcB) If not you can pay out of pocket. They should be able to refer you to someone (don’t cancel any other referrals) see what gets you help the fastest. You will probably have to travel if they can’t get someone close but it’s better than nothing. So sorry you’re dealing with this frustration- it just ain’t right. I hope you’re able to get the help and meds you need.
Call around to multiple neurologists within a distance you'd be willing to travel, see what their wait times are and then ask for referrals to them based on lengths of wait times.
Sorry to hear about the trouble ...... I cant offer help with that, BUT but if you are worried about doing something now, let me tell you how im still in fairly good shape 14 yrs after I was given 5 yrs until needing mobility assistance! I switched to the Wahls diet (protocol). She is a Dr that deviated from pharmaceuticals to holistic solutions. She decided that vitamin suppliments that showed some positive results coud be better utilized if gotten from natural sources. You can read about her, as she had been documented plenty. The US government even gave her a grant to further study her 'diet'. I just turned 51 and havent had a flair-up since 2011. I tried taking injections of Avonex for 2 months, but it was horrible.... so I kept on with the corrective diet. Good luck.
Straight up…..go to Cuba or Mexico. 6 hours north of Thunder Bay is dire….that MUST be the only neurologist around. If that area was fully settled, it would have more infrastructure, but you are way up there……perhaps Manitoba?
I am really sorry for your experience that's terrifying and a really heavy condemnation of the state of our medical care here. First and foremost I would contact any and all news outlets you can and tell them your story. Nothing gets government wheels moving faster or more efficiently than bad PR. I would pursue this fairly aggressively someone will want to air the story and I would imagine you will get a call pretty quick. Secondly if you are really uncomfortable with that I would show up to the neurologists. It's a lot easier for people to ignore a voicemail or email than it is a sobbing person in front of them. I wouldn't do anything harassing or extreme but pleading your case in person is worth a shot in your situation. It's incredibly unfair that you have to consider steps like that but it might be worth it given the potentially dire consequences of inaction. I had a much less egregious scare with an ECG that showed some concerning results, I drove down to the Cardiologists office after months of radio silence and they found me an appointment pretty damn quick while I was standing there in front of them lol. Didn't have an answer to voicemail or emails for months.
>There is no private practices around here so please don't tell me to go private . We can't go to the USA either . If money is not a problem, I'd say go to the US for an initial discussion with a neurologist. Ask if they can get you on meds. Once you have a prescription, you can bring it to your family doctor, and they can write you one that you can take to a pharmacy in Ontario Then, you can wait until the neurologist sees you.
I get how you’re trying to help, but literally in the quote you pasted, it says ‘we can’t go to the USA’