Neurologists' Mistake: Omitted 'C'

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hi it me chris. I've been to four neros. they all tell me to forget als. I just seem fixed on it. Faciculations at rest only but everywhere even my but . when i lean into a muscle this brings it on also. sometimes they jump on their own. Im 39 and have 3 small children. so yes i'm terrified. they tell me without weakness no als. but my right foot is constantly pulling like a weird stiffness. i guess i read too much on the internet and know too much about the symthoms I know i cant keep this crazy feeling up its really got me quite crazed. Primary care doc told me to go the Columbia in new york they are the best of the best. he said it is they will know it. if its not go on with your life. I'm terrified to go my appt. it on monday. I almost feel like not going because part of me would rather not know then know it for a fact. very confused and just want this to end. any support would be gratfully accepted have a good weekend all. ill keep busy with my sons baseball games on sat and sunday and try not to dwell. pray for me and i will for everyone on this post.
 
Chris,

I very much empathize with your fear. With bfcs it's the mental drain that is so horrible. The constant nagging fear that something must be wrong. 14 months ago I would look at my calves and feet and KNOW I was dead and it didn't matter what the doctors told me. Hmmm.... They were right it seems. Over a year later I remain alive which is kinda cool.

The key is staying in the present moment. Love your kids, love the moment and you will find a freedom. My advice to you is to forget about your appointment. It's crazy. 4 neuros? 2 emgs? You don't have als. When a person has als there are many signals for neurologists. My personal opinion is that they know you have it or not when they send you for an emg.

I know it's frightening - I'm frightened too at times even after this long. You will be fine though - don't fight the twitches but embrace them...

MarkS
 
Hi Chris!

Two years and two months of NON-STOP calve twitching, with twitching everywhere else in addition!

YESSSSSS!!!!!! I get thigh cramps, but only in my right thigh. I also get pains like a muscle pulling and some stiffness.

This stuff can drive you crazy. Mark gives some good advice and I'm trying hard to live by it, but it is tough.

Mark, someday we are going to hav e to get together and compare calf twitches - see who gets the most!

Ginny
 
Ginny I would definitely win that comparison especially after exercise. They look like aliens trying to get out. My feet never stop and earily remind me of that video of the guy's shoulder that circulated some time ago. I suppose it is benign but it is hard to believe and I have difficult days with it. I hope you are well.

Mark
 
Don't feel bad Mark, me too.

I have some so big that my entire calf muscle moves, I kid you not. I remember after a training run last year, my calves literally looked like a popcorn party, I'd never seen anything like it.

My feet still get them, but not quite as bad as they used to be. Now I get them more above the knee and my biceps.

I have difficult days, too. At least one moment a day for sure.

Hey, since we tried a "chat" room but it didn't seem to work out, I wonder if anyone would be interested in "hooking" up on AIM. Do you have it?

Ginny
 
Sometimes I think we all need to video our twitches and post them here - it would eliminate that whole "I know he says that his calf twitches 24/7, but he can't REALLY mean that it twitches as visibly or frequently as mine" thing we all seem to do. It's just so hard to believe that anyone else is going through something as strange as this...

I bet everyone on this board would feel better if they saw my calves and the sides of my feet (wow, I bet nobody's every typed that sentence before). And I'm now a month away from the two year mark, with no weakness.

-Robbie
 
I don't. I usually use skype since you can IM and talk. We could all download one of them though. Perhaps we should schedule a time. There is also a conference call feature on skype. Maybe there should be a bi-weekly conference call???
 
Hi-

I get the bad cramping too, except I dont have many other twitches. I have maybe 20-30 a day only in resting muscle but when I exert the muscle for only a short period of time, it goes crazy. I sometimes doubt that what I have is really BFS (and I have never been diagnosed with it. I chose to believe that this is what it is since other nasty things have been ruled out and all of the rest of my symptoms fit)

Anyways, my butt twitches and cramps ALL the time! My right pinky toe has a weird pulling feeling that drives me crazy and my right leg just feels really really weird. It is kinda wobbly too but I wouldnt call it weak. I can jump up and down on it and never fall. MY right arm also feels weird but same thing. I can do as many pushups as before (which was never many by any means). If you can still do the things you used to do, then I think you should be fine. And even if you dont want to believe that you have BFS, keep in mind that about 30-40% of the things neuros see in their office are unexplained and usually nothing to worry about. They know what to look for. They've spent so many years in med school and such that we all need to learn (myself included) to trust in them.

Good Luck and as Mark said, enjoy every single minute with your children. Anything can happen at any time so we should always live in the present moment.

~JAime
 

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