Twitching for 2.8 Years: Results So Far

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octavia031

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I've been twitching for 2.8 years, started non stop in my calves, had clean EMG after 1 monthI know have 3 HOT spots, and I mean twitching every SECOND1. calves: 2.8 years2. 1st dorsal: between index finger and thumb (back hand): 5 months straight3. right side foot for some days now. I also have to tell you that I have ankle pain and my right side since a couple of weeks, really bad ankle pain, for no reason and now this foot is non stop twitching?If I connect the dots this has to be ***, pain in ankle because of slight weakness + non stop fascics...Also this night I woke up and I had no strength in my left hand. I could not touch with my thumb my other fingers rapidly. It felt kind of stiff too.Now it's better.I'm so scared now because I can't believe this is BFS anymore.Is it possible to have so much hot spots?Don't you think this is more bad because my ankle hurts badly and than non stop twitching has started there?
 
LostboySorry to hear of your current flare up. I like you have been twitching non stop in feet and calfs area for more than 2 years. When I was examined by a neuro in Sept 2008 I kept stressing the fact that I had ankle pain. He concluded that it was probably due to BFS and/or excessive use, ie self testing-walking on toes/heels etc. He stated he wasn't concerned about the ankle pain and I should try to focus on living my life. I still get the odd flare up of ankle pain but it always appears to settle down, again the more attention paid to symptoms the worst they APPEAR to become. You have been twitching now for almost 3 years and undergone a full neurophysiology assessment which has ruled out any pathological condition, so I assume (I know you should never assume) your symptoms are associated with BFS.Kind RegardsDav.
 
Hi Davo,Thanks for your answerI must say I have knee pain on and off for the last monthsNow the ankle pain started around 5 July, but I know I had a friend test my ankle for ankle clonus (yes I know) ,like maybe 20 times in a row. The pain however started 5 days after this and is still here. Now that foot is constanly twitching too. So I'm freaking out. I know also walked on my toes a couple of times but I'm just 30 years old, slim body type so it can't be from to much weight I guess. Also when I'm walking my foot seems to be acting a bit weird, I can't explain this but it's like I keep hanging after things but the surface is flat, it's more something in my shoe that my foot keeps hanging (have this in all my shoes) Sorry can't explain this one right.Also I have huge dent in my hand (thumb index finger) with non stop fascics going on. But I don't have real weakness that I know of, but I'm sure this is atrophy, it looks really weird.The ankle pain is really severe, I tried some pain killers, no relief and now that it has started twitching non stop my anxiety goes trough the roof.I also have a lot of paresthesia in my fingers at nightTremors in hands and arms (more left), shaking limbs...it drives me nutsI've had a clinical in May : reflexes 3/4 everywhere with beat of clonus, mild hoffman. But they concluded no convincing arguments for ALS. However I'm going to get a new EMG in August. But I'm 100% sure this will be a bad one. I know for sure that in my hand that's atrophy. I'm so messed up right now.Was your ankle pain severe and was it there for a long time? What did you do to get rid of it?Thanks
 
123LostSoul456 mate....3 years should tell you one thing...............your fine as far as the nasty one goes, simple as that, you would be a modern day miracle if it was what you think it is. IT AINT MATE !!!! simple as that buddy
 
thanks Chris but why is my ankle and knee hurting like this? Also non stop fascics in that foot. Really scarying me.I also walk weird, my foot behaves weird in my shoe, really odd.
 
mate i have 400 + twitches a MINUTE in my calfs, non stop 24 hours a day....and yes sometimes they are stiff as hell, its only bfs tho matey
 
LostboyMy ankle pain was quite severe at the time and I did nothing to get rid of it apart fron concentrate on other things. I still get joint pain sometimes BUT pay it no attention. Atrophy and weakness go hand in hand, two years ago I was convinced I had atrophy in my calfs, my neuro simply stated this misconception was due to anxiety. I kept asking my wife constantly if my legs looked smaller, she said no BUT I couldn't hear her I just thought they were shrinking. ALL this was due to anxiety. The mind is more powerfull than you think.Dav
 
Lost boy, ankle/knee pain could be just ankle/knee pain, not BFS related, not a nasty related, just pain that many others in this world experience that just comes then goes. Maybe a strain, may be joints, older age, injury etc etc....maybe nothing. The point I am making that is appears that us BFSers continually scruntize every little ache and pain and if we dont think it is BFS related, we think it MUST be a nasty related. The body is a strange thing and sometimes we get aches and pains for no real reason-they come and go. I have ankle and knee and shoulder and arm and back and neck pain ..etc etc on and off all the time. I am not sure of the origins of it all, but I sure as hell dont start focusing on the 'what if' all the time. To do that would surely send me F**King insane! Sometimes a 'rock is just a rock'..nothing more. cheersRodger
 
Lostboy, Aussiesufferer is right. I also get pain and stifness in my ankles, knees , sometimes shoulders, wrists, etc you name it. It does not mean a thing except maybe that is we age our bodies sort of start turning on us and we can't take the stress on our joints that we used to. Please try to relax and realize that not everything does mean something sinister and especially try not to focus on these things all the time.Mary
 
Yes, even when you are only 30 years old. My Neuro told me that once you hit your 20's you start losing fluid in your back discs and elasticity in your joints and a rhuematologist he sent me to told me he sees people with arthritis etc in people even younger than you. Depending on how athletic you have been sports running etc, what you do for a living, maybe you do a lot of heavy lifting and such. or even just daily living will take its toll on our joints. I used to run ten miles a day up until last year and I really screwed up my knee so now I bike walk and elliptical and I constantly have stiff ankles sore wrists shoulders etc. I have noticed it even more in this last year since this bfs hit. So no there is no telling when the next syptom will hit or how it will manifest itself but I have quite a few hot spots also. That is just the way bfs works.Mary
 
Lostboy... may I ask if you are getting enough sun. I would try to get more sun (without sunscreen) and try eating two bananas a day and see what happens. This is what I had but after eating 2 bananas as day and drinking more milk it stopped... I don't know if it's a coincidence or not. BTW this video is NOT ME... and my twitching is not as bad as this person's BUT notice the his web in his hand was pulsing. That's what I had for a few days. It stopped now thankfully!
 
My other fingers don't twitch like in the vid but like when they film it between the thumb and index,however mine are smaller but really as fast as those, non stop for more than 5 monts with a dent...:(
 
you can get atrophy there from cervical herniations or carpal tunnel...my neuro actually has it in the same spot from cervical herniation.
 

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