Benign fasciculation syndrome (BFS)

I'm new to this discussion, but like everyone here, I've been diagnosed with benign fasciculation syndrome. I don't have time to narrative my long medical journey, but suffice to say it's been the same sort of ordeal that many of you have experienced. For me, I'm most interested in what worked best for people by way of treatment. Second, it seems like there is mounting evidence to suggest that BFS is caused by one or multiple of the Human Herpes Viruses (e.g., HHV6 and HHV7).

I wonder whether we all could get better treatment if medicine new how to better treat these viruses. I would be interested to hear you thoughts. Thanks for hearing me out.

I am new to this group and have just been diagnosed with BFS; my symptoms started after my second Pfizer Covid vaccine and I think it may be related, does anyone also think this….
I have had all the tests done and have been prescribed by the neurologist Clonazepam 0,5 mg, does anyone have experience with this medication and if it helps.

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.

I am also new to this group and was amazed at the amount of people, who suffer from this! This is new for me since February and I feel like my BFS is a result of the 3rd Moderna vaccine. I’ve been tested, poked, prodded and shocked (EMG), MRI from Brain to Lumbar spine, DNA complete genome test and ION micro nutrient tested. I’ve had zoom calls with the top neurologist in Tel Aviv and the Clevelend Clinic. Upon studying my full reports, they found nothing. I should be happy I suppose, that the bad diseases are ruled out, but this isn’t pleasant either! I’ve tweaked my supplements ( NAC, Mg, CoQ10, Omega 3, Glutathione, B12, Turmeric, Nicotinamide, Selenium, Iodine) 10 times, changed my BP meds and got off of the low dose of Nortryiptyline, I was taking for migraines. Nothing helps and I feel like Benadryl and melatonin make it worse. I cannot stop my Crestor as I have a stent in my LAD. Not sure if Crestor could be the culprit. Other generic Rosuvastatins caused muscle tremors initially, until I started taking Crestor. But Crestor is also Rosuvastatin, I don’t know. I would love to have one night’s sleep without waking from this. My neurologist prescribed Gabapentin, but that made it worse and the thought of trying Lyrica just scares me. I drink 2 liters of H2O daily and take probiotics, electrolytes plus extra 1000mg combo magnesium supplements. I eat healthy and watch my diet carefully. Does anyone have any other suggestions?

I've had muscle twitching all over my entire body, 24/7, it never ever stops. Going into 3 years of this insanity I finally have learned to somehow live with this but it's not easy. What is very upsetting to me is that the numerous neurologist and endocrinologist and internal medicine doctors I've seen over the last 3 years with dozens upon dozens upon dozens of tests coming back all negative etc I find it very disheartening that all these doctors just chalk this up to benign fasciculation syndrome and send us on our way with either Xanax or tell us to go on a antidepressant. I'm so tired of this. I do not understand why all these neurologists from around the world are not coming together and trying to figure out what on God's green earth is causing benign the circulation syndrome because there's nothing benign about it, it's never ending and tormenting people like me that try to ignore constant muscle twitching all over! These doctors just send us on our way and I don't see any research going on or neurologist talking to other neurologist trying to find out what is the cause of this. How can all these doctors all these specialists just chalk this up to benign fasciculation syndrome and not get to the root cause of what the heck is causing this. I'm so tired of it and I'm tired of the nonchalant attitude from too many doctors. We need real doctors to put their heads together and scientist as well and find out what has caused every muscle in our body to short-circuit and vibrate and twitch etc non-stop.

I'm just very discouraged and disgusted with the medical community that they just think nothing of giving us this diagnosis of benign fasciculation syndrome because that's an easy way out for them to just tell us oh it's benign and go on your way and just deal with your entire body feeling like it's short circuiting all the time. Until I see neurologist and other doctors getting together along with scientists and trying to find out at least trying to find out what the cause is I'm through with them. Yes they've sent me on my way Yes they told me to live with it but you know what that's not good enough for me. There's got to be some root cause or several root causes for what causes a human body to have every single muscle from head to toe twitch constantly.

I have suffered with my body tremors for years and they can never find much with me either. It takes a toll on the mental health. It is truly frustrating that doctors don’t seem to crave enough knowledge to figure out what the heck is happening to people.

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...

Sorry to hear that; my journey started after the second Pfizer vaccine end May 2021 when I noticed twitching and spasms in my legs; since then I have had all the tests available and the outcome was BFS; after a 9 month wait I am now finally going to have a test for small fibre neuropathy (SFN) which will be next week and the whole day will be of tests….. the results will take 8 weeks. After that I will have closure knowing I have done all I can.
Tests so far were MRI, EMG, Doppler, various neurologists. I am so sick of the many medical visits since this happened. I have tried various drugs and they don’t help. I suppose I will just have to learn to live with it.
I wish you all the best…