ALS Support Community

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Scared87
Wow, that's amazing! I was just reading about this earlier. Spine MRI normal. EMG showed no signs of ALS but that it was similar to "myotonia" where anytime he moved the needle any fiber touched slightly contracted which caused any other fibers nearby to contract. He said I had BFCS and absolutely not ALS. Performed on same arm that's shrinking. How did you find out you had that?
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Scared87
Sorry - you said you're still not sure. Do you have fasciculations too? If so, did you have widespread twitching before or after you thought you had ALS? I spontaneously had widespread and non stop random twitching when I thought I might have ALS. I wish we could DM on here!
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AlwaysLivingSca
So mine was weird, one day i was sitting at work , and my whole bicep started going crazy for like 1 minute, then it stopped , that night i woke up with pain all the way to my fingertips , 2.5 years later it hasnt gone away , lost about 15% of muscle mass on bicep , delt, and pec . Went to a neuro who did an emg and said it was normal, went back a year later and he said it was normal
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AlwaysLivingSca
I didnt believe him ( I read online this was a nerve problem) so i changed insurance and got a new neuro who did my 3rd emg , he found psw in my deltoid and fibrillations in my bicep, and diagnosed parsonage turner syndrome, I twitch everywhere, its funny neurology is basically a guessing game, there no concrete evidence to go straight to a diagnosis of anything
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