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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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Mentor
John, Volunteer Mentor | @johnbishop | Jul 4, 2021

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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rmfmayo | @rmfmayo | Oct 24, 2021

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

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keithl56 | @keithl56 | Nov 7 11:32am

I have been having serious fasciculations (mainly calves and thighs, although occasionally in biceps, hand, and upper body). My wife said it looks like an alien trying to get out of my leg.

My neurologist (already under care for chronic microvascular ischemia and lacunar strokes) has done testing to establish the cause and has been able to rule out everything but BFS and ALS. He said that the definitive test that is recommended is a 3 limb needle EMG. I have had needle EMG twice before (ulnar nerve) and prefer not to go through this painful procedure since a positive diagnosis for ALS will have no impact on the prognosis or treatment (there is none).

Also, my local neurological practice (in DE) does not seem very familiar with or dealt with many (probably very few) cases of these rare disorders. My PCP has recommended that I go to Jefferson (Phil) or Johns Hopkins (Balt).

Does anyone have experience with this type of situation? Has anyone used surface EMG vs needle. I have read that good results can be obtained with this without the pain of a needle EMG, and I think that Penn offers it.

My next neuro appt is 12/11. I am contemplating getting a second opinion from Penn.

TIA,
Keith

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3 replies
Moderator
Lisa Lucier, Moderator | @lisalucier | Nov 7 12:15pm
In reply to @keithl56 "I have been having serious fasciculations (mainly calves and thighs, although occasionally in biceps, hand, and..." + (show)
@keithl56

I have been having serious fasciculations (mainly calves and thighs, although occasionally in biceps, hand, and upper body). My wife said it looks like an alien trying to get out of my leg.

My neurologist (already under care for chronic microvascular ischemia and lacunar strokes) has done testing to establish the cause and has been able to rule out everything but BFS and ALS. He said that the definitive test that is recommended is a 3 limb needle EMG. I have had needle EMG twice before (ulnar nerve) and prefer not to go through this painful procedure since a positive diagnosis for ALS will have no impact on the prognosis or treatment (there is none).

Also, my local neurological practice (in DE) does not seem very familiar with or dealt with many (probably very few) cases of these rare disorders. My PCP has recommended that I go to Jefferson (Phil) or Johns Hopkins (Balt).

Does anyone have experience with this type of situation? Has anyone used surface EMG vs needle. I have read that good results can be obtained with this without the pain of a needle EMG, and I think that Penn offers it.

My next neuro appt is 12/11. I am contemplating getting a second opinion from Penn.

TIA,
Keith

Jump to this post

Hi, @keithl56 @rmfmayo @johnsmith1980 and @johnbishop. I merged the 2 discussions about benign fasciculation syndrome and amyotrophic lateral sclerosis (ALS) into one to bring everyone together on the topic.

REPLY
dbchip | @dbchip | Nov 8 5:11am
In reply to @keithl56 "I have been having serious fasciculations (mainly calves and thighs, although occasionally in biceps, hand, and..." + (show)
@keithl56

I have been having serious fasciculations (mainly calves and thighs, although occasionally in biceps, hand, and upper body). My wife said it looks like an alien trying to get out of my leg.

My neurologist (already under care for chronic microvascular ischemia and lacunar strokes) has done testing to establish the cause and has been able to rule out everything but BFS and ALS. He said that the definitive test that is recommended is a 3 limb needle EMG. I have had needle EMG twice before (ulnar nerve) and prefer not to go through this painful procedure since a positive diagnosis for ALS will have no impact on the prognosis or treatment (there is none).

Also, my local neurological practice (in DE) does not seem very familiar with or dealt with many (probably very few) cases of these rare disorders. My PCP has recommended that I go to Jefferson (Phil) or Johns Hopkins (Balt).

Does anyone have experience with this type of situation? Has anyone used surface EMG vs needle. I have read that good results can be obtained with this without the pain of a needle EMG, and I think that Penn offers it.

My next neuro appt is 12/11. I am contemplating getting a second opinion from Penn.

TIA,
Keith

Jump to this post

I’ve had several EMGs and they are totally painless. I don’t even feel the needle. It’s so small.. Now the Nerve conduction study is painful and Uncomfortable. I have twitching all over my body and I’ve had it for 20 years About three years ago. I was diagnosed with peripheral neuropathy in my feet, which is idiopathic. If you have no weakness, I doubt you have anything sinister going on.

REPLY
shiner3190 | @shiner3190 | 1 day ago
In reply to @keithl56 "I have been having serious fasciculations (mainly calves and thighs, although occasionally in biceps, hand, and..." + (show)
@keithl56

I have been having serious fasciculations (mainly calves and thighs, although occasionally in biceps, hand, and upper body). My wife said it looks like an alien trying to get out of my leg.

My neurologist (already under care for chronic microvascular ischemia and lacunar strokes) has done testing to establish the cause and has been able to rule out everything but BFS and ALS. He said that the definitive test that is recommended is a 3 limb needle EMG. I have had needle EMG twice before (ulnar nerve) and prefer not to go through this painful procedure since a positive diagnosis for ALS will have no impact on the prognosis or treatment (there is none).

Also, my local neurological practice (in DE) does not seem very familiar with or dealt with many (probably very few) cases of these rare disorders. My PCP has recommended that I go to Jefferson (Phil) or Johns Hopkins (Balt).

Does anyone have experience with this type of situation? Has anyone used surface EMG vs needle. I have read that good results can be obtained with this without the pain of a needle EMG, and I think that Penn offers it.

My next neuro appt is 12/11. I am contemplating getting a second opinion from Penn.

TIA,
Keith

Jump to this post

EMG is not that bad. The nerve portion with the minor shocks is a little uncomfortable but not terrible. I found the needle portion to be even easier. Certainly less than getting blood drawn. I would say do it if it helps determine what is going on.

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keithl56 | @keithl56 | 1 day ago

Maybe they have improved it. My wife had to stop hers in her leg because it was so painful. When I had my 2 ulnar nerve EMG's it felt like they were sticking a hot poker into the fleshy part under the thumb and every time they moved it it was excruciating. I've been shot and it was less painful. The woman doing my last one said that she has had big, tattooed bikers that couldn't take it. I am figuring that at my appt on 12/11 that the neuro is going to recommend it. I'm still trying to figure out if the surface EMG is possible.

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