Benign fasciculation syndrome vs Amyotrophic Lateral Sclerosis

Posted by johnsmith1980 @johnsmith1980, Jul 3, 2021

My grandfather had ALS (46 y.o. onset), my mom had some undefined dementia (45 y.o. onset, and I am inclined to think now it was FTD). I am 41 now. My concern is twitching soles (the side fine muscle where the arch is). Right sole is way more intense than left. It twitches every 3 seconds, non-stop, 24/7. Firing is not intense. And I have no idea for how long it has been there, month or years. I noticed 7 months ago when my soles started hurting after a long walk or run. I went to see neurologist, underwent EMG and NCV which was clean. No other symptoms such as weakness or muscle waste. So Dr. agreed it's BFS. I've read tons of studies, articles, talked to people firsthand. Everyone with BFS reports twitching of multiple muscles – that is widespread, and I have twitching of only one specific muscle – even if it's on both sides. Yes, sometimes I had that all-over-body twitching too, since I am an anxious person with a range of psychosomatic symptoms. But I am really concerned about my sole. Can BFS persist forever only in one muscle symmetrically? Can fasciculations precede weakness years before ALS onset? Can it be a coincidence that someone with ALS in the family surprisingly have BFS? Having read tons and tons of material, I have never come across some similar situation. It's such a grey area in science. At times I am so scared feeling like I am walking on the edge of 2 outcomes. And I am not ready to get tested for genes since not sure if I can deal with the results in case it's unfavorable.

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Hello @johnsmith1980, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. According to what I've read the two conditions are not linked but are similar.

Excerpt from article below — "Many people with BFS fear that it can turn into ALS, but the two disorders are different and do not seem to have any significant link to each other. Anyone who is uncertain of their symptoms should return to their doctor for a diagnosis." — Benign fasciculation syndrome: What causes muscle fasciculations?: https://www.medicalnewstoday.com/articles/320388

There are other discussions where you can meet other members who may also have some thoughts on your question:
— Benign fasciculation syndrome (BFS): https://connect.mayoclinic.org/discussion/benign-muscular-fasciculation/
— Amyotrophic Lateral Sclerosis (ALS) Lou Gehrig’s disease: https://connect.mayoclinic.org/discussion/als-2/

@captainanxiety8, @greeneyedenergy, @wendycad, @richman54660 and others may have some thoughts to share with you on BFS vs ALS. You mentioned not being ready to get tested to see if you the same genes as someone in the family with ALS. If it were me, I would want to know so that I can do more research and putting together an action plan if needed. Wouldn't you be somewhat relieved to know what you are up against by getting tested?

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I have the exact same symptoms in the feet and the calves. Had it for 7 months now

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