@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

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

I have no other symptoms and did not have Covid😬

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.

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.

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

Thank you so much for your response. I appreciate you sharing your experience. I will definitely ask about that. Have a great day. I pray for all in this struggle.

I had BFS present this way in 2009 and I too went through terrible health anxiety. It was chronic, now I just get it from time to time. It is uncomfortable and feels scary, so I pray. I hope you feel better soon.

I noticed that you post is almost a year old so I hope you are doing well. I have suffered with body wide muscle twitching for close to 20 years. It was diagnosed as BFS by my Neurologist and I did develop Idiopathic Peripheral Neuropathy in my feet 3 years ago. My advice is to find a good Neurologist and they will perform a neuroglial exam and EMG/NCS. Twitching body wide is not a symptom of ***. It starts in one hand and always has WEAKNESS associated with it.

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.