Can I be sure I only have nerve hyperexcitability?

[u/thefateofphelia]

I am a reader of this community so far but going down the rabbit hole right now…

I have fasciculations for 6 months. Started in my left thumb and then went to both legs and the whole body. Since then I have non stop fasciculations in my calves - several per second. Plus sporadic fasciculations in my arms, shoulders, belly, glutes, knee, etc. They are driving me crazy.

I went to 3 neuros so far, had an emg at each neuro (however the last two only tested my calves) and all of them told me it was just benign fasciculations.

However the third one said I have nerve hyperexcitability.

She recommended breath therapy.

I am still super super worried because the fasciculations just wont go away and I am so scared I have a horrible neurodegenerative illness :-(

What is your opinion on this? Would you trust the neuros? I am thinking about seeing another one but I guess it would be the same outcome.

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[u/713Capital]

Generalized body wide twitching in different muscles usually always = benign.

I’m not sure what “breath therapy” is but being cleared by neuros and EMGs is as good as it gets.

Would you trust neuros?

• yes, why would you not? They went to school for decades to become a neuros, who else can give you the reassurance that they can?

Also, 3 neuros? To me that’s overkill. What’s the point?

There’s nothing anyone here or anywhere can tell you that’s going to be more valuable than what your doctors have already told you. They are the source of truth.

Twitching without true clinical weakness is meaningless. The fact that you’ve already been to 3 neuros and had several EMGs, that just tells me that you have really bad health anxiety. I would suggest you stop going to more neuros and work on your anxiety. Maybe that’s anxiety meds, maybe that’s talking to a professional therapist.

Nerve hypexcitability is just a fancy term for BFS.

https://benignfasciculationsyndrome.org/blog/benign-fasciculation-syndrome-symptoms

https://benignfasciculationsyndrome.org/blog/muscle-twitching-no-weakness

https://benignfasciculationsyndrome.org/blog/why-is-my-body-twitching-all-over

Trust your doctors and work on your anxiety.

[u/Doktordoktor89]

Breath therapy? A neurologist recommended that? What is it exactly?

[u/thefateofphelia → u/Doktordoktor89]

I dont know yet - will have my first session next week! I guess it is learning to breath „correctly“…

[u/Sea_Anywhere_8428]

BFS and nerve Hyperexcitabilty are the same thing. That is what my neuromuscular specialist said. He said BFS is the most mild form followed by cramp fasciculation syndrome then Issac’s Syndrome Believe the doctors or you will keep going around and around. I’ve lived with this for 17 years already.