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!

You have to find a new neurologist if u have those symptoms!!! Did they look at your bloodwork and do a lumbar puncture (LP) to check your CSF. The CSF should be examined because it can flag neuromuscular diseases. when I asked my neurologist if he was seeing Covid stuff..he said “ya weird stuff”. I am a RN. Not happy with no diagnoses. When I got Covid I hardly had a sniffle but had fever,loss of taste and smell,severe muscle pain and brain fog and major fatigue. The fatigue got worse after I recovered (I returned to work on day 16) had what I told my co-workers as a weird feeling in my legs. I also had strange sensation as if my brain did not know where my legs were (proprioception problems).
I went to a back specialist cause I thought it was my back. He was great and ordered a brain mri. I got it done privately cause there was a 2 yr wait. Live in Canada. Cost me 900$ and the results were innumerable white matter hyper intensities. About 4 months after the twitching and burning started. Went to neuro again and he was an asshole and did nothing. I have tried many supplements etc. going to get a second opinion soon. There are bad and good drs just like in any other profession. Find a GOOD one.

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!

Canada same way. Unless you yourself experiencing this there is little understanding. I’m sure my next appt with neurologist will be useless. Last time I went I was totally gaslit. Sent me home with clonazapam. I told him “this is NOT anxiety” and he shrugged and said “well we use it for other things” but then withheld any explanation. I went to my car in parking lot and cried. I will get one more muscle nerve conduction test then I guess I will have to sit back and let my health concerns play themselves out. Getting tired of it all as I’m sure my friends and family are (hence why I’m on this site). Not one to give up.

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 was told “not to read on the internet”at my first appt and I’m a nurse!! Ya right… I think a Dr would try to find answers to their health. True most of us know more about long covid because we want to feel normal. I only look at scientific studies online

You have to find a new neurologist if u have those symptoms!!! Did they look at your bloodwork and do a lumbar puncture (LP) to check your CSF. The CSF should be examined because it can flag neuromuscular diseases. when I asked my neurologist if he was seeing Covid stuff..he said “ya weird stuff”. I am a RN. Not happy with no diagnoses. When I got Covid I hardly had a sniffle but had fever,loss of taste and smell,severe muscle pain and brain fog and major fatigue. The fatigue got worse after I recovered (I returned to work on day 16) had what I told my co-workers as a weird feeling in my legs. I also had strange sensation as if my brain did not know where my legs were (proprioception problems).
I went to a back specialist cause I thought it was my back. He was great and ordered a brain mri. I got it done privately cause there was a 2 yr wait. Live in Canada. Cost me 900$ and the results were innumerable white matter hyper intensities. About 4 months after the twitching and burning started. Went to neuro again and he was an asshole and did nothing. I have tried many supplements etc. going to get a second opinion soon. There are bad and good drs just like in any other profession. Find a GOOD one.

I'm having weird sensations in my legs as well. I just had an mri for my back by a spine Dr. I will get those results on the 28th. I also have an appointment with the neurologist on the 25th. I have muscle discomfort, like tight leg muscles, I have the sensation that my calves are being massaged but it's not pleasant. I have groin pain, heavy legs, and cramping sensations, cold temps are the absolute worst I'm on a walker right now. I'm 56 and my life has changed dramatically. I went to the ER and came out with gabapentin which I am on until I see my Dr. Mornings are the hardest because I wake up at three and wonder if my legs will hold me up. I had covid and went for an infusion, I did not get the vaccine.
I hope and pray you get an answer for what you are experiencing.

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