Benign fasciculation syndrome (BFS)

Just ahead of the conversation. I've had fasciculations starting about 60 years old. I'm 80 now. Mayo Clinic ruled out any thing like ALS. Now, at 80, they believe I have Parkinson's. I don't think the two are related but it's kind of interesting to me. Of course, I won't know for sure about Parkinson's until my neurology console and August.

I got used to the fasciculations pretty fast. Physical therapists when they spot the fasciculations don't want to do any work on me unless they know ALS has been ruled out.

This article might be fascinating to some people :
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4192433/

I get burning in my face and forearms, aches, tension, twitching. If I work out during a flare, I completely crash for days to recover as if I ran a marathon.

Did you have the whole deal (cramps, tingling,burning,aches) or just fasciculation? Hope your well friend

Yes, I have everything. I started with muscle weakness, flu like symptoms and then muscle fasciculation began. Leg cramps more and more-then burning in my thighs. I feel really good (and sleep well) as long as I take all my medicine:
Tramadol - flu like symptoms
Carbatrol (prescribed by Mayo)- for nerve communication
Gabapentin- for tingling in legs and to help me sleep
Duloxetine-helps me sleep with pain
Baclofen (Prescribed for people with MS)- helps with leg cramps and pain in arms
Rock Tape-I apply on my right arm to help with arm pain.
My son just had genetic testing completed. They found he has the gene for "Spinal Muscular Atrophy". What it can cause sounds like the Cramp Fasciculation Syndrome. I hope a research scientist reads this and can move a cure for this disease forward.

Wow.. describes me pretty accurately. Thank you for your response. I’m 10 months in at 36 y/o with two little kids at home. Very nervous of a NMD. How do you work out? Stay out of your head? I’m having a lot of trouble with it. Also, I’m horribly fatigued and have trouble getting through the day with it. Any input would help. Thank you!

Unfortunately the medical journal supports the fact that exercising makes the muscles worse. That is very hard to hear. I've stayed away from everything including yoga and Pilates at this point. I have to rest my muscles all day. Keep in mind I worked full-time, 7 days a week. I owned a tax and accounting practice. (I had days where i could not type or move my arm, buy the tax returns were completed.) When I go to the doctor I tell them I cannot exercise due to my disease and they are ok with it. I walk only. Not sure what "NMD" is. Since I was diagnosed at Mayo, the local neurologist I see is liberal with prescribing medications. Thank God. It sounds as if you need to go on Tramadol asap. I take it every 5-6 hours, 4 times a day. If I miss a dose, I walk around thinking I am starting with the flu. Once I take the Tramadol, the flu like symptoms disappear. Due to all the medications, my symptoms are mostly out of mind. I thank Carbatrol for that. My brain function improved greatly once I was on this.

I think I had the disease all my life but I really noticed a problem starting in my early 30's.

I'll pray for you. Again find a good neurologist. I am in the Detroit, MI suburbs if that helps.

Hello all - I saw this post as I have had this condition for years. I read thru many of the posts but not all / I can say that while my heart goes out to all it feels good to know I am not solo in this condition! I read that 70% of the population gets this from time to time. We are the lucky ones where it chooses to take up residence. For me it is mostly calves and triceps. Sometimes other places - and absolutely stress and stressing about the symptoms makes it worse. Googling does wonders for making it worse so I try to just stick to places like here on Mayo Connect and the Dr. I had an EMG done awhile back which came back normal. I also get buzzing type sensations which are transient and interesting. In my case it is believed to be tied to disc compression and spinal stenosis in my L4/L5 area. I also push too hard on the bike so that caused some nerve issues. The arms I am convinced are tied to cervical issues due to phone / computer etc. I also noticed a near immediate enhancement to the condition after the Pfizer vaccine. I don’t know how many of you have had your spine scanned but it’s a consideration. I am a weight lifter and do a lot of vigorous cardio. I had some odd sensations in my right lateral knee, calf twitches and some back pain. I went to the ortho and there it was. The nerve doctor and neurosurgeon advised not getting surgery and diagnosed BFS and likely parathesia from the nerve root. I am 63 and I think the fascitations have been going on for 5-6 years or more. I know this is not fashionable or medical but if I release this more and more to my faith in Christ it does bring peace.

I wish there was some cutting edge research and treatment for this. I had my hopes high for Mayo but apparently it's not on their radar. It's a horrible disease/syndrome and I suffer everyday with it. Knowing nobody cares or is trying to understand it and find treatments for it is truly heartbreaking. Perpetual endless suffering.

Yes, i am suffering with BFS. Mine started a year ago with twitching in my lower legs. My symptoms were getting worse and i was concerned about ALS.Saw a neurologist who scheduled an EMG, also a head to toe MRI. Everything was normal. Diagnosis was BFS. Currently my twitching is causing lack of sleep. She ordered a prescription for Carbamapezepine. It sorta helped on the sleep but currently not so. The twitching is in my hand and is driving me crazy. I am going to see her again and give update but i am afraid that there’s nothing to relieve this.

A follow up to this since I last posted. I have had one injection of Botox that helped tremendously, eliminating fasciculations almost entirely for the span of 3 months. It's tough to get health insurance to cover it (BCBS prefers "whitebagging," i.e. covering the procedure only if you use their pharmacy, which almost no providers will agree to due to safety concerns.)

That said, it worked, and worked very well. I do not tolerate gaba, pregaba, carbamazepine or any of the other drugs well, so this was a huge relief.