Long term BCFS, Just Neeed Oppinion

Seanblock

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Hi All-

History:
I have had BFS since I was 22. I have had MANY neuros look at me, and 11 EMGS (I am 38 now). Those emgs mostly were for carpal/cuvidal tunnel, but a few were for my high burden of fascics. I've had them all, from my scalp to tongue to toes and I'm used to them.

Question:

I've developed a non stop, never ending fascic on my left outer arm. One day a few months back I looked down and saw it. It's between my bicep and tricep. It just goes fast and never ending. It's not the normal "pop pop, stop pop" break then repeat of BFS. Should I be any more concerned if a fascic never stops in the same place without weakness in two months? My ALS clinic neuros seem to want to see me every 6 months, they say they have never seen a benign patient with #1 them in the tongue like me, and how many I have. So can this never ending spot be benign like I've always had? I've message my neuro, but would like to get some real world experience. Is truly a twitch a twitch and no way to tell them apart? It was my understand that BFS comes and goes. This does not.
 

Nikki J

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You had non stop twitching the your thumb in 2015. It wasn’t ALS and there is no reason to think this is now. Hot spots are actually common in bfs

finally Dr Turner of the Oxford MND clinic said about tongue twitches that they are almost always benign.
 

Seanblock

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Nikki J, I did! It's on the same arm. But it would go for hours, stop and go again. But it was rythmic like this is I suppose. Just concerned because it won't stop. That's all. Thank you!
 

Seanblock

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As of now I am 3 months and my bicep fascic is nonstop, and it's spreading to my tricep area. I've never met someone with a nonstop fascic in the bfs group for more than a few weeks, I have an emg scheduled in two weeks.
 

lgelb

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Stop back by when you have the EMG report, but I'd expect it to be reassuring. Meanwhile, it's never too late to see what food/drink/exercise strategies may reduce the fascics, even if you have kept a diary previously. Biochem is ever-changing. --Laurie
 
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