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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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jbenoit | @jbenoit | Apr 14 3:56am
In reply to @monkeytime777 "Hi. I saw a similar question from a couple weeks ago but didn’t want to ask..." + (show)
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Hi. I saw a similar question from a couple weeks ago but didn’t want to ask a question in their thread. I am a 53 year old otherwise healthy male and two weeks ago I started getting twitching in both quads and hip flexors. A few days later I experienced them also in my shoulders and arms along with my legs. I don’t have any apparent muscle weakness although my hamstrings have a sensation of being weak some of the time.

I’m really nervous this is ALS even though it might not fit the more usual presentation of muscle weakness first. The twitching keeps me up at night but sometimes after I’ve gotten a little rest the twitching subsides or is cut down significantly. I also get what I think are myoclonic jerks as I’m falling asleep. Sometimes three or four of them. At times when I’m distracted or exercising most or all of the twitching seems to go away but then later it comes back with a vengence. In addition I do have what seems like nerve hypersensitivity where my muscles fire faster than normal at times.

I do have anxiety although I’ve never formally been diagnosed and I definitely have health anxiety. I have an appt with my GP this week but I just wanted to ask if anyone has had a similar presentation of symptoms that turned out to be BFS and not ALS. I’m pretty scared right now and am hoping that the fact that the twitches are all over rather than just in one location can still be BFS. Has anyone else had BFS present this way? Thank you!

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Find a good neurologist in the biggest city close to where you are. The PCP will just refer you to one. The neuro will do a nerve test to see if it is a nerve issue in your arms and legs. They can also test you for ALS, BFS or anything else that they see. Also, remember, you may have more than one issue that is presenting itself at the same time. I would definitely go to the best Neurologist you can find and get a jumpstart on this quickly. All the best to you, my brother-in-law ALS and he was able to get quite a bit of assistance before he has to come to the disease. I am hoping for you that is not ALS.

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