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Benign fasciculation syndrome (BFS)
Brain & Nervous System | Last Active: 2 days ago | Replies (415)Comment receiving replies
I've had BFS with cramps for almost four years. Saw primary doc, endocrinologist, and neurologist for two and half years. Finally got referred to a neurologist that specializes in neuromuscular disorders. They tested me for ALS because I had a lot of symptoms. He confirmed it was not ALS and diagnosed me with BFS. I take Kepra, gabapentin, and baclofen. Almost maxed out on all of them before I finally started getting some relief. Most nights are good with no severe cramps. But, I do still have nights when I can't sleep at all because as soon as I relax, I cramp. You should insist on seeing a specialist in neuromuscular. The symptoms of BFS are the same as ALS. You need to ensure you don't have ALS.
Replies to "I've had BFS with cramps for almost four years. Saw primary doc, endocrinologist, and neurologist for..."
I’ve had continuous muscle nerve twitches for the last 4 1/2 years…. Walk 4 miles a day and do resistance training 3 times a week… they started randomly all over usually only one twitch and done but sometimes will twitch for a few seconds…. Never when I start moving always when I’m stationary sitting or laying down…. Never interferes with sleep but is constant and annoying…. Had mri etc…. Absolutely no muscle weakness or cramps…. Just nerve wracking twitches that people say just forget about it…. I’m glad there are people out there that are experiencing the same thing and understand the impact that it had
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I was tested for ALS, MS, MG, etc. 8 years ago not because of my fasciculations, but because I was suddenly aspirating everything I was trying to eat. I struggle with difficulty controlling food in my mouth, fatigue of chewing muscles, and having food slip down my throat before I'm ready to swallow causing aspiration. I was afraid I had ALS. I lost 25 pounds in a month because I couldn't take aspirating anymore so I quit eating. They did all the testing and determined that it was all part of my HNPP (Hereditary Neuropathy with Pressure Palsies) I've had issues with since my teens. Two neurologists agreed and one was a neuromuscular specialist. My diagnosis was revised to HNPP with Cranial Involvement. I've just learned to what I can and can't eat, keep my head down, etc. I was relieved it wasn't ALS!
I agree that you should look for a neurologist that specializes in your particular issues.
I think I really need the atenolol 50 mg to fully control the fasciculations, but 25 mg keeps them tolerable and from turning into cramps. Can't raise the dose now due to low BP caused my other meds.