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Benign fasciculation syndrome (BFS)
Brain & Nervous System | Last Active: 5 days ago | Replies (465)Comment receiving replies
Hi all, I’m 40 and I’ve been having daily fasciculation twitches in my outer right hand muscle below my pinky for over a month and my quad muscles also seem to get stiff on and off but particularly at night. My PCP ran a bunch of labs which came back normal and gave me a referral to a neurologist. My anxiety is high and I have an appointment booked but it’s several months away. I’m worried about it being the start of ALS but hopeful it’s BFS. Has anyone here had BFS with more of a localized muscle twitch and not widespread? Anyone have muscle cramping in an area different from the fasciculation?
I appreciated reading this thread and hearing all of your different situations and hope you’re all doing okay
Replies to "Hi all, I’m 40 and I’ve been having daily fasciculation twitches in my outer right hand..."
@brian146 so my fasculations started in 2022. They started in my calfs. Felt life worms were moving under my skin. I also had leg cramps that felt lingered into the next day. I was so worried. The fasculations then went to other areas. Had all the tests. Including emg of my legs. All normal. The doc said I didn't have MS, ALS or anything like that. Also had a brain mri. Recently my primary care doc ran my ferritin levels because I have a history of being anemic and of course they were low. Well I've been on iron supplements for 6 mons and the fasculations have improved . So wondering if it was that. I read it can take a long time for them to stop if its due to low ferritin. ALS will have weakenss included with it. And loss of muscle mass. Hope you get answers. Praying God will bring you peace and good doctors.
@brian146
My fasciculations started about 2 years ago and like you was very concerned. Anytime I'm at rest they are particularly annoying. Mine are primarily centered on the calves and thighs, although I have had random ones in various places (biceps, hand, torso). When they are very bad it can cause cramping, especially in bed.
I had all of the labs which came back normal (to exclude factors other than ALS) and then a 4 limb EMG, which verified the fasciculations and eliminated the prospect of ALS. What a relief.
As long as you aren't experiencing weakness or muscle atrophy in association with the fasciculations I wouldn't worry. Plus, just the stress of worrying can actually exacerbate the fasciculations - a vicious cycle.
BFS in itself is not fun, but totally harmless. Try to not focus on your twitches (easier said than done) until you can see the neurologist who will be able to give you an accurate diagnosis.
Good Luck!
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@brian146, wondering about this can be stressful. I had convinced myself I had either ALS or Parkinson’s. It turned out to be neither. My EMG tested my hands and feet.
As I recall, I had widespread fasciculations but also certain spots that occurred repeatedly. My first spot was a place in my right foot. It often occurred at night or when I was still. I also had an eye twitch that occurred almost daily right before my workout and during the workout.
I regret all the anxiety I put myself through before the tests. On the bright side….I was so upset I started talk therapy about it and it turned out that therapy was quite beneficial for me overall and I continued in the therapy for over a year. It helped me with the anxiety and other issues I was experiencing.
If it’s possible, you might call the testing location and see if you can get on a standby list, so that if there’s a cancellation, they can call you and have you come in. That works if you have time flexibility and can pop in last minute.