Benign fasciculation syndrome vs Amyotrophic Lateral Sclerosis

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!

I have heavy legs and heavy upper arms and numbness in my groin area.I also have loss of feeling in the trunk of my body.I can't believe I can walk at all because of how weak I am.I had the Pfizer vaccine,but just the first two doses and no additional vaccines or boosters.I think all of these symptoms are brought on by covid,but I am sure the vaccines are not the Best either.Who knows what the side effects of those will be.When I went to the Specialist he found a Borderline antibody for Myasthenia Gravis.There are different types of Myasthenia Gravis and there are different types of Myasthenia diseases.You might want to get checked for it.They can be brought on by covid,infection or extreme stress.I was doing research and long covid clinics are using mestinon to treat long covid patients.Mestinon is the same drug used to treat Myasthenia Gravis. It helps the muscles and nerve signals to work properly.They also have been using it to treat Chrnoc Fatigue.I think Chronic Fatigue,Autoimmune diseases and Epstein Barr are all being set off in the body from Covid.

I am doing better. I got off of gabapentin. I hope that was it.

Hi Alecia!Were the Doctors able to give you treatment for your issue?I have alot of twitching and spasms along with muscle weakness.The neurologist told me it is not ALS,but I am still not sure.I wonder if part of my symptoms might be similar to what you have.I just had Genetic testing done.I am waiting to heat back from the doctor.

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!

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

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

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