Benign Fasciculation Syndrome Questions

[lrossi2266]

Hello all,

In May 2020 I began experiencing muscle twitching in my arms and legs. I went to my primary care doctor and got a number of blood tests done and all came back normal. I saw two separate neurologists and had a CT scan done along with an EMG. All looked normal. Finally the neurologist diagnosed me with Benign Fasciculation Syndrome after ruling out everything else.

I experienced symptoms from mid-May 2020 until late-March 2021, so 10 months. Finally in April I became symptom free up until about last week (5 months in remission) when my symptoms re-emerged. Is this common with BFS to have periods of remission?

Outside of the muscle twitching, I feel extremely drained by the afternoon every day and have noticed that I also have some dry mouth and bad breath accompanying my muscular symptoms. I dealt with the symptoms for 10 months, but it really did effect my daily life and my happiness. I don't know if I can deal with them again for more months on end.

I understand that there is no real cure for BFS, but have read that there are some medications that could potentially help including Tegretol.  Does anyone have any experience taking Tegretol to treat BFS?  Was it effective?  I really hope that I can find a way to get rid of my symptoms once again.  Thank you in advance for the help and suggestions.

- Luke