Benign fasciculation syndrome (BFS)

Hi there. I have been reading you diligently from France for a few weeks now. I am also affected by all the symptoms mentioned by several people here. Some slight fasciculations on the left calf began a few months ago. I think I did too much sport, lack of magnesium etc...And then everything gets worse at the end of June 2022. The fasciculations are felt in both calves, my toes start to move on their own, one of between them retracts (and still is), tingling, burning sensations etc... Then my arm muscles started to move (not fasciculations but contractions), the thighs... I also feel vibrations internal to falling asleep or waking up (in the head, neck, arms, etc.). In short, what panic. My doctor referred me to a neurologist. The clinical examination (very summary) reveals nothing at the time but blood test, EMG and MRI programmed. In my research, I also wonder about chiropractic. I am aware of my situation. Thank you for all your stories and this forum.

Welcome @tbarbotte, It's good that you are doing your own research and learning as much as you can about your health conditions. Do the fasciculations seem worse after an activity of any sort? How soon is your appointment with a neurologist?

Thanks for the reply @johnbishop . No, my fasciculations are almost permanent in the calves, especially at rest (sitting, in bed...). I don't feel like it's more or less present after physical exercise...I really feel like it's there all the time ;). My EMG is scheduled in two weeks and I don't have a date for the MRI yet (3 months delay in my city...).
I don't know if these symptoms really correspond to a BFS or not. If that were the case (i suppose everyone prefers that here to ALS or besides a degenerative disease), I don't know how to understand the sequence of events to "live" with it...

Not sure if you have searched for articles on BFS but thought I would share this one just in case you haven't seen it. It does talk about diagnosis, treatment, BFS vs. ALS and Outlook which you might find helpful.

Benign fasciculation syndrome: What causes muscle fasciculations?: https://www.medicalnewstoday.com/articles/320388

Thank you very much @johnbishop . I had already read a few articles but this one remains very enlightening because I recognize myself in many elements. I would allow myself to come back to give some news here if it does not bother anyone, in order to share the medical conclusions and, perhaps, help other people if the BFS is confirmed. In any case, you are far ahead on the subject compared to France. Have a good evening.

@tbarbotte, I do hope you come back and share your experience as you learn more. It really helps to learn from each other.

Hoping your health journey gets easier from here!

Hello. I am new to the forum and like most very scared and concerned.

I am a 50 year old male in good shape. My concern started February of 22 with some patchy numbness on one calf then the other. Would come and go over the course of days. Then about 2 months later I noticed my calves started to ache and feel tight like I overworked them. This would come and go over days but then progressed to every day It would go from aches and pain to a tightness.

I then started researching google and found something about Als and cramps. I don’t know if aches and pains with tightness is considered a cramp but it was not the contraction with pain as described under cramps. This started me reading about symptoms. Well about 2 months later I noticed twitching in my calf then the other. Stated out minor a few hours a day the. Progressed to throughout the day. I made an appointment with a nuro at pen medicine she did exam and found nothing but recommended an emg study 2 weeks later I had the study and everything came back normal. I felt great and thought my anxiety would clear up and the twitching would go away. Since the emg I have more diffuse twitching. The tightness in my calves resolved about 80% and the pain has reduced however still there. I now have some muscle pain in my thighs that comes and goes.

Just a few days ago I revisited the nuro at Penn who did a physical exam and said everything is normal and said I had bfs.

I read articles that say twitching can proceed weakness and other posts that say by the time twitching starts you will show something on emg and have other signs if you have Als.

In addition, the emg, nerve study was performed on my lower legs and my dr stated that if something were wrong in my body above where the emg was performed, she would have seen an abnormality on the emg.

Needless to say I am down the dreaded rabbit hole of constant worry.

1. Is cramping the same as muscle pain and or tightness feeling?

2. Can twitching occur before signs both physical and on emg studies regarding als?

I am now second guessing everything, scrutinizing her report which stated no active signs of nuro involvement. She had seems very confident it was bfs however I am still concerned. Thank you

Hello @markfrompa1, Welcome to Connect. Searching with Dr. Google can give some scary results and cause us to have extra anxiety and worry. I have been down that rabbit hole before myself. Others in this discussion including @captainanxiety8 @summer49 @lizaa @richman54660 @borkoksg and @jesfactsmon may have some experience with BFS to share with you.

Have you seen this article on BFS?

-- Benign fasciculation syndrome: What causes muscle fasciculations?: https://www.medicalnewstoday.com/articles/320388

Yes I did. Have been googling non stop and I know that is not good for my health or anxiety. Thank you for the article link.

I have been prescribed Clonazepam/Klonopin for BFS. I am reluctant to take it because of side effects and would like to hear of any experiences with taking it. Does this drug make the symptoms go away or just suppress them?
I read that driving and alcohol is not allowed when taking this drug, which would be an impact on my quality of life forever and I do enjoy the occasional glass of wine. The fasciculations give me sleepless nights so I don’t know what else to,do.