Calf Twitching and Pain

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ChrisUK88

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Hi allI am sure you all know my story, 7 months calf twitcher, and really violent ones too. The twitching i can put up with but its the awkward pain in my calf that upsets me the most.My right calf just feels well so not right, it feels like its on the verge of trying to cramp up when i walk, really tight feeling that makes you want to stretch it to make it go away, only if you do stretch it does not go away. Its making my walk so clumsy looking and i can feel myself trying to stop myself from limpingI can run but it hurts then, well hurt is not the right word, just tight all the time again. i can still run up stairs etc but i do suffer after it.I read some posts on here that with people who have twitching first that go on to develop ALS weakness usually happens between 5 and 10 months after twitching...so i guess i am still a long way from the safe zone :( Also my right calf is smaller by 1/2 " than my left, there is no getting away from that, i have measured it over and over again and it just is.....all this is happening in my right calf, the tightness, the smaller calf, the violent twitching.This has to be something to worry about right??? sorry for posting again just really fed up AGAINChris
 
Hi Chris,Your symptomns are exactly like mine, really, the only difference that it's my left that feels thight, cramps etc all the time.I'm almost 18 months so 1.5 years into this 24/7 absolutely non stop calves twitching, cramping, hurting, tightness...But guess what...due to my cramping I saw my professor ALS specialist again last week - dx again BCFS. He' really confident it's not ALS. I talked again with him about the twitching before weakness and 'the stories'. He said never to trust those stories. He says he sees patients with fascics but when he does a clinical he notices weakness that the patient isn't even aware of. So you are checked by a neuro ...try to trust him...I know it's really hard. Today I have a really bad day and it feels like my left leg is weak. It's cramping, hurting and having really weird twitches at the bottom of my leg... it scares me again but I try to trust my neuro that it's 'just' BCFS. We both got a severe BCFS , nothing more nothing less...Try to stay away from the board for a while, it's been said by tons of old timers but it's true, it does put your mind off it.Hang in there Chris!Best regards,Bart
 
Hi ChrisI feel your pain! As you would have seen from my recent post I am in the similar twilight zone, constantly feeling that I am just on the brink of developing barn-door ALS/ MND, based on the same symptoms as you and based on the anecdotes of timeframes from onset of fasciculations to ALS presentation. Odd though it may sound, I am simultaneously sitting here at my computer fretting like hell whilst feeling quite confident that you have nothing to worry about. A bit paradoxical I know but I guess it is easier to be logical about someone else's problem than your own!Good luck.My symptoms came on in early Sept 08 and became right calf predominant at the end of Nov 08. It sounds that you and I are on a similar timeline. I suggest we put a date in our diaries to celebrate that fact that we have made it through this timeframe at which we can rest easy that it'll all be ok! We could organise simultaneous *beep* for our respective friends and families - a transglobal celebration as it were! In the meantime I'd encourage you to not waste as much as energy as I am on worrying about yourself. Good luckSimon
 
Hi simonSo from your medical knowledge have you heard too that 5 - 10 months is typical for any ALS symptom to appear after twitcing?chris
 
Hi ChrisNo I haven't found any info from my medical sources to suggest that the 5 to 10 month timeframe is based on good science. I hace acquired this knowledge from this website and anecdotes from neurology chat rooms and I think that in reality we are both probably absolutely fine. But I am not a doctor when I am sitting there fretting like hell about my symptoms... I am an ordinary and somewhat anxious guy who doesn't want to have ALS because I love life far too much. For some reason, I have told myself that I can let my guard down at the 12 month milestone but this is not a medical opinion.Hope this makes sense - it is late here in NZ and my brain isn't working properly (shouldn't have had that second beer!)!CheersSimon
 
yea the 12 months being a safe time to let your guard down makes sense, as i think the same thing....mine started on 31st august !Just wish i did not have this ackward tight pain when i walk...makes me not want to go anywhere !!Chris
 
Hi Chris - Intrigued by your post I went and measured my calves and they are....1/2" different. I think they have always been different. We did a study when I was in college, where embarking on a new training technique, we all measured ourselves meticulously at the start then again at the end of the term. We were all amazed at the asymmetry of our (then) youthful and rather well-formed bodies: literally NOBODY in the class was symmetrical in calves, thighs, feet, arms, you name it. We did find that the training evened things out a bit as it worked on specific muscle groups in isolation. Secondly, I just started having very tight calves again (first time since 4 years ago) and am relieved. Believe me, it is MUCH preferable to a very tight neck or back. But it does hurt, like all tightness does, and makes you walk funny. A secondary tightness is the sides of my hips and this presents more of a problem because it is very difficult to look normal strolling to the office at work when those are rigid and hurt. So don't worry - maybe this is a good sign in that it (the bfs badgers) is getting ready to move on to another local or ease off for a while. Hopes it's the ease off. Try warmth (hot baths, warm socks,etc.) - a temporary but welcome respite.
 
Hi there ChrisI hate to say it but I am so glad to hear you have this tight awkaward feeling in one of your legs because there is safety in numbers and if you have it and I have it and so do some of the other people who have posted on the BFS site then this must be a good sign! As you know from my recent post ('leg stiffness') I have worried far too much too much about this leg stiffness of mine and I think I should probably stop worrying now although this is easier said than done. Well I started on 7th Sept 08 so I am a week behind you! Between now and then I am sure that you can I can afford to be less anxious (I will if you will!). To help put my own mind at rest, can you tell me is the tight feeling in one or both calves in your case? It's only on one side in my case.CheersSimon
 
Hi Chris and Simon,I too have the awkward, stiff feeling in my left calf that you guys have. I have a question for you both. Do you have any change in sensation in the leg with the stiffness??I ask this because my leg "feels" kinda different to the other and i'm not talking about the stiff feeling. If i dig my nails into the stiff leg, i can't feel it as well as i can in the other leg. (yep, i'm strange i know!)Be good to hear from you bothZoe
 
hiYes i do get what you mean, its like a numb feeling, i have days when my right calf feels like it belongs to someone else, just does not feel all there if you get me
 
Yeah, that's exactly how mine feels! I hate all this, it's awful. I thought i was the only one with the weird feeling leg until i read posts from you and Simon. Feels good to know that i may not be crazy after all! Also my leg feels worse in the night and first thing in the morning.
 
I too experience sensory change in the calf which is more affected by stiffness and fasciculation. IN my case, the sensation is of someone pouring cold water down my leg. I had to check that I hadn't wet myself once - only kidding... that would have felt warm and nice not cold and yucky!CheersSimon
 
I just saw your video. Wild as its look, I can tell you that it looks like that under my feets from time to time. I am almost 2 years out and yesterday i walked 12 km without problems... From my humble point of view they look benign and my guess will be that theyll get better as time progresses. Have patience...!
 
Finally, a post with people that have one sided cramps! Very nice to have a group with my exact symptoms that I have had for many years now.I am 30 and have had severe twitching all over my body and stiffness/pain/cramp in one calf for almost 3 years now!Unlike most of you though, I have never had an EMG done and don't plan to. I definitely recommend it for everybody else though, I just don't have an interest or perhaps the courage to get it done. I spoke to a neurologist who has written some articles on bcfs and he said that my history alone was enough to be sure that I have BCFS and nothing else so I have been happy with that. I expressed that my greatest concern was that I feel disabled from my leg cramp and that this could be weakness... his answer was that BCFS can be very disabling. The 'Benign' nature of it is just that it doesn't kill you, which is all I care about. But he did have patients with BCFS that could not do the things they use to.I can run, jump and exert strength with my bad leg, it just will hurt if I do. When I try to test it, I can run as fast as I could when I was young but within 1-2 min my calf hurts like heck....I can continue to run through the pain though. If I do that though my leg will really hurt for 2-3 weeks and my twitching all over my body will get worse...so I try not to test myself anymore...it just drives up my level of anxiety for the next 3 weeks.As for atrophy, I have always had a 'dent' in my bad calf but it really hasn't changed much after 3 years and the bulk of my leg has stayed pretty much equal. But i'm far enough into this that I dont obsess about subtle changes in asymmetry like most of you newbees probably still do. But Ido remember when I was there.. looking at my body in different lighting and angles..all crazy making, so I have learned to stop that. Anyway, glad to meet all you one sided crampers;)
 

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