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BFS or ALS?
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!
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Exactly!No one understands unless they are dealing with it themselves.It is very difficult to find a good neurologist.The problem is if these symptoms are all brought on by covid they are not going to figure it out.They definitely like to throw anxiety medication at everyone.They just need to say that they have no idea what is wrong istead of blaming it on anxiety.I think that is very difficult for doctors to do.The vagus nerve is attacked by the covid virus as well and the vagus nerve controls so much in the body.I tried to ask the neurologist about the vagus nerve and considering it is supposed to be their speciality he did not know one thing about it.The only medicine I have taken my whole life is synthroid for Hashimito's disease.It took almost 15 doctors just to figure that out that I had Hashimito's which is crazy.Even a specialist a John's Hopkins could not figure it out.I have one doctor trying to get me into NIH right now.I don't know if anyone will know be able to help there,but maybe.If anything works or if I hear of any new treatments I will let you know.
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
Exactly!I have actually received more information and help on support sites for covid/autoimmune issues than any doctor I have met with.People want to help people that are going through the same thing.
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.
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.
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.
My former husband was recently diagnosed with HSP. He is having symptoms of double vision, dizziness, slurred speech and inability to walk, usually coming on after supper. These usually resolve in about 2-3 hours. He has been to the ER 3 times as they thought he was having TIAs. No evidence of TIA was found in the tests. Are you having any of these symptoms?? Are they part of HSP??
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 am doing better. I got off of gabapentin. I hope that was it.
That is Good News!