benign fasciculation cramp syndrome ?

pinedurby

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Mar 17, 2021
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Hi Everyone!

Let me start off by saying obviously I'm very nervous as I am sure a lot of people on here are. Love the feedback and support everyone has for each other on here!

So, I've been having some fasciculations throughout my body (started with eye) then recently have been noticing some cramps in my thighs and hands. I was "diagnosed" by my neurologist with BFCS. But from what I've read on here and other forums this still could very well be ALS or some other MND. Please let me know if anyone has experience with this or has gone through some thing similar. No, I have no weakness at all. I just am very concerned that it was a misdiagnosis and that this could be early signs of ALS.

Thanks everyone !!

Just to dive deeper into the cramps (especially my calves). Seems to start with a lot of tingling on the bottom of my feet then in about 5 minutes my calves will lock up and cramp ( almost like a charlie horse). Let me know if anyone has experienced this or If this is something that could be an early symptom.

Thanks!
 

ShiftKicker

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Hi there- please read here:

While you may be worried it could very well be MND/ALS, you have already been given a diagnosis and also don't show the typical constellation of symptoms that makes a neuro think ALS. While it's common for people to feel anxiety about ALS when they twitch, it's super important to work on leaving it behind if the neuro has cleared you and you've been given a diagnosis already. There are some great groups out there that support those with BFS/BFCS- reddit has a good one.
 

pinedurby

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I understand I have a diagnosis and would like some others feedback on here as well. As, we all know many people are misdiagnosed everyday.
 

Bestfriends14

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As Shiftkicker said

"While you may be worried it could very well be MND/ALS, you have already been given a diagnosis and also don't show the typical constellation of symptoms that makes a neuro think ALS. While it's common for people to feel anxiety about ALS when they twitch, it's super important to work on leaving it behind if the neuro has cleared you and you've been given a diagnosis already. There are some great groups out there that support those with BFS/BFCS- reddit has a good one".

I'll second Shiftkicker 's opinion.
 

lgelb

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Third that. You are good to go as regards ALS.
 
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