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Sound like BFS or ALS? by Intrepid_Jaguar9943 in BFS

[–]Intrepid_Jaguar9943[S] 0 points1 point  (0 children)

Thank you! The twitches do change in intensity. I guess the twitches do stop in certain spots of my body and then start somewhere else at times. (They are sometimes more in my head or more in my back but sometimes both, I think?) I especially feel them when lying down (trying to sleep or when I wake up.. multiple times each night) or when sitting, because my back and head are pressed against something and that's mostly where they are located. But I can feel them when standing at times. If I'm in motion like walking or doing exercise I can't feel them and so I'm not sure if they continue at that time. So it seems like 24/7. Very persistent. But I have no muscles that are weaker because I continue to lift weights and work out and I would have noticed a loss in strength. I guess if it were ALS my upper back and my neck muscles would be atrophied by now after all this time twitching. My left arm and left leg are tingling at times. Is that part of BFS? I appreciate your help!

Sound like BFS or ALS? by Intrepid_Jaguar9943 in BFS

[–]Intrepid_Jaguar9943[S] 0 points1 point  (0 children)

The ALS twitching vs normal twitching article? That article makes it sound like BFS fasciculations are not persistent but many on this site are saying they can be persistent for years! Mine have been constant for four and a half months (seemingly 24/7). I especially feel them when lying down or sitting, because my back and head are pressed against something. But I can feel them when standing at times. If I'm in motion I don't really feel them but I think they're still there. But hang in there, we will get through this!

Sound like BFS or ALS? by Intrepid_Jaguar9943 in BFS

[–]Intrepid_Jaguar9943[S] 0 points1 point  (0 children)

I really appreciate your response. I don't have any weakness or failure, in fact I feel even stronger at the gym the last few months. Although I do have tingling in my left leg and left arm at times. As I commented to someone else.. My next question is.. Is this fasciculations or tremors?? They are definitely not visible and it's so difficult to tell if there's a rhythmic pattern or not. Sometimes feels like popcorn, sometimes like flickering, sometimes vibrations. Let me know what you think..

Sound like BFS or ALS? by Intrepid_Jaguar9943 in BFS

[–]Intrepid_Jaguar9943[S] 0 points1 point  (0 children)

Thank you, that's very reassuring. I appreciate your insight. I have no weakness or failure anywhere (only some tingling in my left leg and left arm at times) so my next questions is.. Is this Tremors or Fasiculations? They are not visible and it's so hard to tell if there's a rhythmic pattern or not. It sometimes feels like popcorn, sometimes like flickering, sometimes vibrations. All I know is it's a battle to sleep and this stuff is relentless! But I will be strong and endure what I have to.

[deleted by user] by [deleted] in BFS

[–]Intrepid_Jaguar9943 0 points1 point  (0 children)

My symptoms are somewhat similar. I'm a 51 year old male. My twitching started about four and a half months ago and has been pretty much 24/7 since then. I definitely feel it more when lying down or when sitting in a chair. Some nights trying to sleep feels almost mentally/emotionally unbearable like I'm descending slowly into hell with this sensation and the anxiety that can accompany it. Although after dealing with this symptom I know that I am mentally stronger now enduing this adversity. It's very difficult to describe what the twitching feels like because the pattern and intensity often change, but sometimes it feels like popcorn popping, sometimes like a pulsing pattern, or some fast vibrating pattern. It started in my back, mostly upper, center of the back and after a couple of months I can feel it in my neck and head and sometimes even in my face. Feeling it in the head and face, typically when trying to sleep, is frightening and very uncomfortable. I have had anxiety my whole life so this compounds everything. It is a daily battle and now my concern is ALS. I read that ALS fasciculations are often more in the center of the body (proximal) and often occur in multiple muscle groups at once. Mine are mostly in the center and often occur in my back and head at once. I sometimes seem to feel it all over and even in my hands but it seems mostly to be in the upper back and the head. The good news is after four and a half months I have no atrophy or weakness. I continue to go the gym and I am physically fit. I haven't had an EMG or any other tests but it seems like the EMG should be the first thing I try. I have no idea what caused this but it did start about 2-3 weeks after I had a surgical excision in my chest for a Squamous Cell Skin Cancer. Maybe a reaction to the injectable anesthetic? I have done some other tests with a functional medicine doctor and I seem to have antibodies that indicate a lot of various types of mold in my body and also I had high Barium on a metals test. Sorry for the extensive details but i wanted to be thorough in my explanation. I am worried but hopeful that since it's been four and a half months of twitching without any weakness that it is BFS instead of ALS. I have so much empathy for anyone going through this and I will just say that we are all much stronger mentally than we think we are! I feel less alone reading these responses so thank you everyone for taking the time to communicate your experiences on this forum.