Benign fasciculation syndrome vs Amyotrophic Lateral Sclerosis

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?

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

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!

@monkeytime777 i have this but was diagnosed with hereditary spastic paraplegia complex type. it was found by a mitochondrial genetic test. potassium and calcium ion channelopathy can also give these symptoms it's more noticeable at bedtime because your muscles are not receiving the instructions to stop so you get that sensation. there's a lot of thing it could be besides ALS. I know its scary especially with this kind of thing. Best of luck to ya

Thank you! I hope you are able to get treated for your condition and are doing well

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.

I have also been twitching all over (toes to face) the last three weeks. No other symptoms though. I can’t see a neurologist until June. This has me so worried that it is hard to carry on with everyday things. I’ve always been healthy. How are you doing now??

I’m having the exact same issues. Everything started after getting covid. Twitching especially in calves but has moved up to thighs and butt at times. Exactly as first comment. Settles if distracted. I feel weakness as well. I do believe I have long covid. Have seen a neurologist prior to the fasiculations. It’s driving me nuts cause I worry about als as well. I have tried many supplements. Just started nicotine patch at lowest dose of 7 mg. There is a theory that Covid spike protein messes with acetylcholine receptors. Yes I am desperate but will try this. Small medical study. Helped some people with fatigue. Jury is out. Many many studies have been done on Covid causing neuromuscular issues. They have looked at some muscles through biopsies of long covid patients and seen amyloid deposits in the fibers as well. Do your own research and stick to real medical studies. Tip of the iceberg when it comes to this virus. Wish everyone well and hoping for answers and healing

Hello!I have had muscle twitching all over for about 6 months now.I have been ill for over 2 years though.No doctor can figure it out.Did you happen to get covid?My symptoms came on after an iron infusion/possibly covid.My other symptoms are trouble swallowing,trouble walking,loss of muscle in face,trouble smiling,chewing amd talking. My eyes are so squinty and dry and can barely be in the sun.I also have weakness in my diaphram/sternum area where it should be pushing the belly down.It is like the strength just dissapeared.I also get the signals that I am hungry,but don't have the sensation of food going down on the belly or a full belly.It is basically like the sensation went away.I also have big inflamed upper arms and legs.The only thing I have had since my 20s is thyroid disease and I never took any other meds besides synthroid.I do not smoke,drink or do drugs.I was healthy and exercised all of the time.The only thing I can think of is that I became anemic from heavy periods and maybe covid got me before the infusion set in or maybe after.I guess an iron infusion lowers your immune system making it harder to fight off any virus or infection.Some of my symptoms are just too weird and the only thing I can come up with is Covid.Do you have any other symptoms besides the twitching?The specialists I have met with have no idea.One neurologist told me maybe a metabolic muscle disease,but I asked him if that would cause slow speech,swallowing and chewing and he told me no.The only diseases that come up when I put my symptoms in are ALS,Myasthenia Gravis and LEMS.Maybe I have a new Autoimmune Diseases brought on by Covid.The Doctors don't have a clue about covid.

I have no other symptoms and did not have Covid😬