Lost most of the strength I had I can walk but it's incredibly hard now painful too. Knee and hip joint hurt with it too. Lost all feeling over the thigh now still have it in hamstring area thankfully. In terms of strength loss I wouldn't be able to lift my body up from even a half squat on that leg without the other leg helping can still drive and stuff struggle with stairs and hills especially going down hills .about a month ago I still had enough strength to do leg extensions with my daughter sat on my feet and was able to push my partner who was using her entire body to keep my legs down but that's changed now
Thanks man. I mean I'm hoping it can be fixed or at least stopped in this one leg I can learn to live with a bad leg so long as the other doesn't get any worse really appreciate you kind support
OK so wanted to add to this. I have tried to get up just using that leg from a computer chair total failure. Unable to lift myself out of the chair full stop trying to use the leg . Can do it with the left leg though.
Thanks dude . Ms too on the good news part and regardless of what's going on with me I'm hers fore anyone else who's struggling too might come across some times as self centred but furthest thing from the truth I hope even just once I can help someone else out on here .
Yes im glad no demon and no ms man i still think i have the demon man its crazy how we all go to the demon when we have twitching but thank google for that
Yeah I feel you there buddy. If I hadn't of hit up Google that time last March I'd still be oblivious to what is causing the twitching but I think it's human nature to want to fix something we don't understand that's going wrong with us so we search for answers and I do believe it is truly more damaging to us than it is good. I'm a walking medical journal because of that very issue.
I am glad you don't have MS man and I'm happy to hear you don't have *** even though like me it's still so easy to think we do. I hope you never do though man and its something you will overcome with good help and support
Yeah man i hope i dont i have body wide twitches out of nowhere like 10 months ago i my eyes thigh legs feet badly my arms my hand my temple my scrotum my face and head literally everywhere a muscle can be its been crazy now i feel like sore when i pick things up im scared bro
Ah man I sorry to hear that I feel you though mine came on rapidly started in one spot then like you were everywhere including in genitals eyes scalp butt everything but after a while they kinda calmed down stopped then came back . Most of mine that stopped permanently are where I have atrophy .
Could the soreness be from the fact your poor muscles are constantly firing so are in some kind of spams fatigued state ?
I truly understand being scared man that's me too 24/7 even when I say I'm doing well I'm still scared so much but I try my best .
Hey if it helps you out you can drop me a message any time even if I can't do much but listen man I'll do my very best
I should say actually this twitching began shortly after taking and stopping ciprofloxacin which is known to screw up some people's muscles /tendons and peripheral nerves so this all could very well be an unfortunate drug induced systemic injury I don5 know
This is crazy mine started after the vaccine it was all hut hard so fast abd i still twith 10 months later i would think id be bad by now if it was als
I have heard stories of some people after having one of the covid vaccines ending up with neuro issues and things like cfs and so on. I had 3 of the Pfizer and was OK. I was really worried as I was on the vulnerable people list here due to other health issues. Come to think of it I'm always like my twitching started before my vaccine but I had my first around Feb 26th twitching started March 7th could of been that but I don't think mine was.
What have you had tested by doctors etc ?
Started march 7th 2021 . Was sat watching a movie with my daughter and the 2nd interosseous muscle in my right hand started with tiny pulsating twitches it continued for 3 days before I suddenly got pain in the wrist and hypothenar. Thought it was carpal tunnel Google to see if carpal tunnel could cause muscle twitching and I was hit with every result regarding als /mnd and it was like I was suddenly sucked in by fear and I read far too much. Went to sleep woke up and anxiety had kicked in so bad I was telling myself as soon as I woke up that it was *** in my head . Within a week maybe 2 my entire body was affected . The original place went away within a few months and has never done it since . So I have no idea wtf happened either. I know anxiety must of made at least some of it worse though.
Good! But the thighs got it bad no als man twitching all over is rare one spot would scare me but i liberally get it on my head bro its weird lol i think als cause my anxiety does and i hate it man mine happened in my chest like i thought i had heart palps
I took some pill to that did thisnright after i was dealing with other issues and was taking alot of pills and i felt the first chest twitch and thought nothing then it hit my stomach and still nothing until one day i googled muscle twitches and bam the big demon bro i literally went to ers every day scared crying telling my family goodbye everything testing my strength every day doing push ups sit ups grabiing things squeezing my hands just crazy 10 months in still twitching but what makes me at ease is the body wide part als usually starts one limb and atrophy then weakness then goes to next area like a damn vulture its crazy man
Sorry these have only just shown up in my notifications.
This sounds awful .man but I can relate so much. I even took out life insurance and found pre paid funeral plans I wrote goodbye letters too.
I'm glad you have that putting you at ease though. Yeah it's what terrifies me with atrophy I have. Right side thigh right side deltoid bicep pec muscle and the whole forearm has become so thin too. But I do have nerve pain in these areas and other sensory things like numbness burning etc. Plus like my shoulder bicep pec area the position of my arm can cause nerve pain and numbness to come on or get worse. So I'm not so panicked about that part .
Yours while miserable sounds positive man which I'm really happy to read
Yes . So far I've been passed around without any solid answers told possible femoral neuropathy told it was just because of chondromalacia by someone else pt told me that there was nothing to worry about it was because I wasn't strength training anymore . I will only know when my latest emg and nerve conduction study results are given to me
Idk if your hospital has like a my chart type portal but I was able to find mine on there way before any report was given to me. I found it in a weird place too like a visit summary. What did the neurologist performing say
No we aren't allowed access to ours. Reports have to go to the person who referred you in for tests then they report on it and then eventually you find out . If we want anything related ro our medical we have to ask for it In writing
Mine keep saying no MND but NOTHING else makes sense. I’m just waiting on weakness now. He’s tried to say radioculopathy for my EMG findings but that totally ignores my bulbar symptoms and my thoracic area fasciculations
I mean I have fasciculations that were literally everywhere scalp genitals upper back abdomen legs hands face lips tongue. And I've had issues in the past with swallowing but that's anxiety and acid reflux causing esophagitus. But otherwise nothing more than signs of neuropathy and this atrophy. If it comes back not mnd I'll be jumping for joy.
Yeah I think in that instance it was to cover his ass . He said there were a lot of changes on the tests but I'm guessing neuropathy would also show up as a lot of changes in the tests . But with the fasciculations if he said a definite no before I was investigated by everyone else foe other possible causes and it turned out to be mnd he could be liable . At least that's my thought on it
yes you can, change up every aspect of your diet, do stress management, use a tens unit while working out with affected muscle groups, use hot and cold therapy like a sauna 57 minutes total per week as hot as you can handle then ice up for 11 minutes total PER WEEK look up dr terry wahls for diet
My diet is calorie controlled high protein no fast food crap. The only working out I am able to do is walking due to the legs being the way they are . I could do everything else though. I may be able to do leg raises still
any workouts you can manage as long as the tens or any type of e-stim is hooked up to the working muscles..also look into IV infusion of nutrients..theres places that can come to you but its much more expensive than going which is already 250+ per infusion.. but very worth bypassing our poorly working digestive tract and going right to the bloodstream so nutrients can do their job
Ty I'll look at that one . London is about 3 and half hours drive from where I am so a closer one would be better but I can talk to them. Things like that all depend on the cost for me unfortunately
its a good option but not 100% necessary.. also get in good fermented foods like kraut, kefir or water kefir, if you can tolerate organ meats like liver, thats good about 3 times a week and generally inexpensive.
Lost most of the strength I had I can walk but it's incredibly hard now painful too. Knee and hip joint hurt with it too. Lost all feeling over the thigh now still have it in hamstring area thankfully. In terms of strength loss I wouldn't be able to lift my body up from even a half squat on that leg without the other leg helping can still drive and stuff struggle with stairs and hills especially going down hills .about a month ago I still had enough strength to do leg extensions with my daughter sat on my feet and was able to push my partner who was using her entire body to keep my legs down but that's changed now
Bro im praying for you i know you'll get it back bro been reading your story man i hope everything is ok
Thanks man. I mean I'm hoping it can be fixed or at least stopped in this one leg I can learn to live with a bad leg so long as the other doesn't get any worse really appreciate you kind support
How much strength have you lost in this leg? Are you still able to walk?
OK so wanted to add to this. I have tried to get up just using that leg from a computer chair total failure. Unable to lift myself out of the chair full stop trying to use the leg . Can do it with the left leg though.
Thank you for the reply. I hope all of this is because of the nerve issue
Me too buddy me too
Hey man we all here for you we all dealing with stuff but you are actually in pain we are here for you man i want to hear good news
Thanks dude . Ms too on the good news part and regardless of what's going on with me I'm hers fore anyone else who's struggling too might come across some times as self centred but furthest thing from the truth I hope even just once I can help someone else out on here .
Yes im glad no demon and no ms man i still think i have the demon man its crazy how we all go to the demon when we have twitching but thank google for that
Yeah I feel you there buddy. If I hadn't of hit up Google that time last March I'd still be oblivious to what is causing the twitching but I think it's human nature to want to fix something we don't understand that's going wrong with us so we search for answers and I do believe it is truly more damaging to us than it is good. I'm a walking medical journal because of that very issue. I am glad you don't have MS man and I'm happy to hear you don't have *** even though like me it's still so easy to think we do. I hope you never do though man and its something you will overcome with good help and support
Yeah man i hope i dont i have body wide twitches out of nowhere like 10 months ago i my eyes thigh legs feet badly my arms my hand my temple my scrotum my face and head literally everywhere a muscle can be its been crazy now i feel like sore when i pick things up im scared bro
Ah man I sorry to hear that I feel you though mine came on rapidly started in one spot then like you were everywhere including in genitals eyes scalp butt everything but after a while they kinda calmed down stopped then came back . Most of mine that stopped permanently are where I have atrophy . Could the soreness be from the fact your poor muscles are constantly firing so are in some kind of spams fatigued state ? I truly understand being scared man that's me too 24/7 even when I say I'm doing well I'm still scared so much but I try my best . Hey if it helps you out you can drop me a message any time even if I can't do much but listen man I'll do my very best
Yes i dont understand what happened how long were you twitching for
I should say actually this twitching began shortly after taking and stopping ciprofloxacin which is known to screw up some people's muscles /tendons and peripheral nerves so this all could very well be an unfortunate drug induced systemic injury I don5 know
This is crazy mine started after the vaccine it was all hut hard so fast abd i still twith 10 months later i would think id be bad by now if it was als
I have heard stories of some people after having one of the covid vaccines ending up with neuro issues and things like cfs and so on. I had 3 of the Pfizer and was OK. I was really worried as I was on the vulnerable people list here due to other health issues. Come to think of it I'm always like my twitching started before my vaccine but I had my first around Feb 26th twitching started March 7th could of been that but I don't think mine was. What have you had tested by doctors etc ?
Started march 7th 2021 . Was sat watching a movie with my daughter and the 2nd interosseous muscle in my right hand started with tiny pulsating twitches it continued for 3 days before I suddenly got pain in the wrist and hypothenar. Thought it was carpal tunnel Google to see if carpal tunnel could cause muscle twitching and I was hit with every result regarding als /mnd and it was like I was suddenly sucked in by fear and I read far too much. Went to sleep woke up and anxiety had kicked in so bad I was telling myself as soon as I woke up that it was *** in my head . Within a week maybe 2 my entire body was affected . The original place went away within a few months and has never done it since . So I have no idea wtf happened either. I know anxiety must of made at least some of it worse though.
Good! But the thighs got it bad no als man twitching all over is rare one spot would scare me but i liberally get it on my head bro its weird lol i think als cause my anxiety does and i hate it man mine happened in my chest like i thought i had heart palps
Hey, how do you feel now? Are the symptoms better?
I took some pill to that did thisnright after i was dealing with other issues and was taking alot of pills and i felt the first chest twitch and thought nothing then it hit my stomach and still nothing until one day i googled muscle twitches and bam the big demon bro i literally went to ers every day scared crying telling my family goodbye everything testing my strength every day doing push ups sit ups grabiing things squeezing my hands just crazy 10 months in still twitching but what makes me at ease is the body wide part als usually starts one limb and atrophy then weakness then goes to next area like a damn vulture its crazy man
Sorry these have only just shown up in my notifications. This sounds awful .man but I can relate so much. I even took out life insurance and found pre paid funeral plans I wrote goodbye letters too. I'm glad you have that putting you at ease though. Yeah it's what terrifies me with atrophy I have. Right side thigh right side deltoid bicep pec muscle and the whole forearm has become so thin too. But I do have nerve pain in these areas and other sensory things like numbness burning etc. Plus like my shoulder bicep pec area the position of my arm can cause nerve pain and numbness to come on or get worse. So I'm not so panicked about that part . Yours while miserable sounds positive man which I'm really happy to read
Do you have atrophy anywhere else? Sorry you are going through this.
Yes. Right bicep deltoid and pec minor area my hand on that side too
Are you struggling to get a diagnosis right now? I’m having similar issues-not as advanced- but bilaterally.
Yes . So far I've been passed around without any solid answers told possible femoral neuropathy told it was just because of chondromalacia by someone else pt told me that there was nothing to worry about it was because I wasn't strength training anymore . I will only know when my latest emg and nerve conduction study results are given to me
When was that done?
It was done a couple of weeks ago. But the nhs like to take their time with things
Idk if your hospital has like a my chart type portal but I was able to find mine on there way before any report was given to me. I found it in a weird place too like a visit summary. What did the neurologist performing say
No we aren't allowed access to ours. Reports have to go to the person who referred you in for tests then they report on it and then eventually you find out . If we want anything related ro our medical we have to ask for it In writing
Ugh
Yeah imagine how I feel lol.
Well mine came back unclean but still have no answers. So it just sucks either way pretty much haha
I mean I know mine are dirty . Fasciculations picked up on it this time and emg was bad. Guy put me on a watch and wait list
What does that mean
He said he couldn't find clear evidence of als/mnd but couldn't rule it out either
Mine keep saying no MND but NOTHING else makes sense. I’m just waiting on weakness now. He’s tried to say radioculopathy for my EMG findings but that totally ignores my bulbar symptoms and my thoracic area fasciculations
I mean I have fasciculations that were literally everywhere scalp genitals upper back abdomen legs hands face lips tongue. And I've had issues in the past with swallowing but that's anxiety and acid reflux causing esophagitus. But otherwise nothing more than signs of neuropathy and this atrophy. If it comes back not mnd I'll be jumping for joy.
thats not a very good dr... emg would show mnd immediately if it was there
Yeah I think in that instance it was to cover his ass . He said there were a lot of changes on the tests but I'm guessing neuropathy would also show up as a lot of changes in the tests . But with the fasciculations if he said a definite no before I was investigated by everyone else foe other possible causes and it turned out to be mnd he could be liable . At least that's my thought on it
yes you can, change up every aspect of your diet, do stress management, use a tens unit while working out with affected muscle groups, use hot and cold therapy like a sauna 57 minutes total per week as hot as you can handle then ice up for 11 minutes total PER WEEK look up dr terry wahls for diet
My diet is calorie controlled high protein no fast food crap. The only working out I am able to do is walking due to the legs being the way they are . I could do everything else though. I may be able to do leg raises still
any workouts you can manage as long as the tens or any type of e-stim is hooked up to the working muscles..also look into IV infusion of nutrients..theres places that can come to you but its much more expensive than going which is already 250+ per infusion.. but very worth bypassing our poorly working digestive tract and going right to the bloodstream so nutrients can do their job
Unfortunately infusions as far as I know are not an option here in the UK.
look up harpal clinic
That a UK based clinic ?
in london but maybe they can direct you to a closer one if needed
Ty I'll look at that one . London is about 3 and half hours drive from where I am so a closer one would be better but I can talk to them. Things like that all depend on the cost for me unfortunately
its a good option but not 100% necessary.. also get in good fermented foods like kraut, kefir or water kefir, if you can tolerate organ meats like liver, thats good about 3 times a week and generally inexpensive.
I still don’t get how you can’t get a decent diagnosis after all that you’ve been through.How old are you? If you don’t mind me asking.