BFS or ALS?

@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😬

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 have not had a lumbar puncture yet,but I have had all of the other tests.I have been to 4 neurologists.All of them have been awful.I am thinking all of the good specialists retired during the pandemic.I had an infectious disease doctor check for Myasthenia Gravis.One antibody for that specific test came back borderline.I worked in healthcare as well so it is frustrating not having a diagnosis.I had an extreme reaction and than all the symptoms started setting in.I saw that one long covid clinic is treating patients with mestinon the same drug they use to treat MG.I guess to get the muscles and nerves signaling properly again.I just think the only thing that could have brought this on was covid because my symptoms are so bizarre and no specialists has seen anything like it before.At the beginning I can only compare it to a human vegetable.I could not swallow,go to the bathroom walk.etc.One doctor was giving me rounds of antibiotics,antifungal,antiparasite and nothing was helping.It was the virus attacking my whole body.I am sorry that you are going through this as well.I hope you get answers soon and feel better.I don't know about Canada,but here is the US it is like Covid never existed.It is crazy because I was healthy and my life is completely changed because of this.

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.