Benign fasciculation syndrome (BFS)

I figure I would relate my own story regarding my experience with BFS. In Late July 2016, I just randomly started experiencing a strange pulsating dull ache in my right shoulder. I remember the day well. It was a Wednesday. It would pulse and then I'd get a stronger "zinger" of a pain and it would subside. This reoccurred many times throughout the day. The next day (Thursday), the pain in my shoulder was gone. But it had migrated to my left forearm. Same thing. Pulsing dull ache followed by a stronger zinger of the pain/discomfort. The next day (Friday), it had migrated again but it was in my right thigh. Rinse and repeat. The next day (Saturday), the pain had migrated to BOTH lower legs and feet. In addition to this perplexing migrating pain, I was also experiencing body-wide micro-twitching/spasms. Not large muscle bodies but tiny little spasms that felt like bubbles bubbling under my skin. I also felt pin pricking sensations all over my body. I joked and said there were little gnomes running around on my body with needles and poking me. The waves of pain went away but the spasms and pin prickling sensations remained.

In December 2016, I underwent testing for MS, ALS, etc. MRI was negative, EMG was negative, strength tests were all normal, etc. No doctor ever told me about BFS. They simply ruled out MS, ALS, etc. I continued to research and came across the "BFS" term. I read up on it and saw that it matched what I was experiencing. Since I had already received the "all clear" on the major neurological conditions, I self-diagnosed my BFS.

Here I am... nine years later. Still experiencing daily spasms, pin pricks, etc. I've gotten used to living with them. Thankfully my BFS does not interfere with sleep or any other functions. It's just a constant sensation on my body that I've acclimated to and learned to live with. A neurologist simply said, "Sometimes the human body just does weird things that we can't explain." I have found nothing to make it any better.

But lately, it's been REALLY hyperactive. No idea why. Reminds me of the time when it first started. I am scheduled to undergo another brain MRI on September 29th, 2025. I'm not worried about much but I just want to make sure things are still clear.

I just wanted to take a moment and share my experience with BFS. If you're also experiencing this condition, I know how annoying it can be. But you're not alone. But put your mind at ease. It's benign. Annoying... but harmless and you can live a full and normal life.

I can relate to the constant fasciculations. My calves and right thigh are non stop (my wife said it looks like an alien is crawling under my skin). Occasionally they extend to my biceps, hand, or torso. While not painful, the anxiety they cause is extreme resulting in loss of sleep as I lay there with my muscles randomly firing convinced that I have ALS.

My neurologist has ruled out all fasciculation causes except for ALS and BFS, and I am now waiting to be scheduled for a 3 limb EMG to get a definitive diagnosis. In the meantime, I feel like my life is on hold not knowing what the future looks like. The effects are not limited to myself, with the stress causing my wife to have ventricular tachycardia and saw a cardiologist for the first time last week and is herself now scheduled for a bevy of tests.

My dilemma (putting the cart before the horse) is what to do should I get the expected ALS diagnosis. My neurologist would send me to Penn for their ALS program since it is nearby to my Del. home. However, my house is a colonial and would be a nightmare to navigate when my mobility is compromised. On the other hand, we have a load of friends there which would provide a terrific support group for my wife.

My other home is on the beach in Hilton Head. I have a master suite on the first floor and an open floorplan which would permit me to function longer in my own house. I could enroll in the MUSC ALS program in Charleston or the ALS program at the Jacksonville Mayo. Either one is about 2 1/2 hours away. My wife would not have near the support group there, however. I find it much more peaceful in Hilton Head.

If it comes down to it, it will be a difficult choice.

I can't wait for the EMG's to be done so that I can move forward with my life, or what is left of it.

Did the Alpha Lipoic Acid help?

@keithl56 Hi there! Did you get your EMG result and what is the result? I hope you feel better. I've started all over body muscle twitching since 2.5 weeks ago today (October 6th, 2025). It started with lower eyelid for 6 days daily, then it moved to other parts of body, all over, randomly, on and off, only happens at rest (when I don't tense my muscles), and sometimes I get muscle tension too due to the anxiety anticipating the twitches. I've been checked by a PCP who said nothing wrong with me, but told me to return to her in 2 weeks if my muscle twitching still occurs so that she can refer me to Neurologist for more tests and blood work. I hate this condition! This is all too new for me!

Can imagine, Celia! What about the others; do your twitches stop during movement?

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.