Living with Nothing to Worry About Twitches

[nerjavari]

Hi, this is my first post here I think, although Ive been visiting on and off for a few years.I've been having the 'nothing to worry about' twitches for about 10 years since the age of 21, and have noticed they are less common and less disruptive than they once were - a very good thing and something to reassure those of you who have only recently started. I was never formally diagnosed with BFS, if it matters.However, I've recently been noticing (for past 2 months) that I wake up feeling much weaker than I used to, and now it's even sometimes just having lay down when I go to bed I'l already feel weaker. If I actually test my strength, it's not significantly changed, its just the sensation of weakness. I should mention that I was doing a lot of exercise and strength training almost daily up until about 5 months ago but my routines changed and since then I've been quite sedentary. Is the weakness seen in ALS onset a "I feel fine but I just cant lift things I used to lift" or is it feeling weak and some lesser degree of actual reduced strength?I'm also especially concerned because I've had some strange pain in the region either side of and deep in the tissue around my tailbone for several weeks, I had a CT scan and consulted a urologist because they suspected a varicoceles issue but apparently the scan came back with nothing to remark on. Although I think they were looking in the wrong area anyway. But it seems like there's nerve problems in the area where the sciatic and other nerves gather in the back of the pelvis. However I wasn't too overly scared about that until the last 12 hours, when I went to bed last night I could feel sharp nerve pains in lots of places - fingertips, toes, near my nose, arms and calves etc. Pretty much anywhere and a new little flare would appear every 2-5 minutes so much that I had to take a oxazepam sleeping tablet just to get to sleep. Now this morning I can still feel little nerve pins here and there. I have noticed some occasional nerve sharp pain in my fingers now and then for a few months but not on this kind of regularity.I could understand if it was only nerve pain radiating downwards from the pelvic region, but this seems random and all over the place.Now, because there is a family history of neuro disorders in my mother's side, I'm freaking out (and have been ever since I found out about the history to be honest, its what brought on the original BFS twitching I think). So I guess I'd rather not hear any doom and gloom opinions about my symptoms but I would like to hear if I am showing benign symptoms of some other sort. Also I'm interested in what can be done to strengthen and build resilience in the nervous system? Should I push myself back into the exercise training I was doing before, or will that aggrevate issues?I realise I'm probably best asking all this of a doctor, but I have little faith in the GPs in my area - they dont seem to really bother with any issues aside from antibiotics for colds and flus and such. Also, if I do have some catastophic disease I'd probably rather not know as long as possible which doctors dont really get.Cheers... Damien

 

[nerjavari]

I don't know about ALS, but BFS does do some really random things....the one person I know that had ALS didn't twitch at all until the end and she could not feel them at all. When she started with it, her hand just was not able to pick up her coffee cup. She felt fine, she just could not lift it. There are many things that could be going on with you, and the fact that you have had 10 years with this going on is a pro. Doesn't feel like a pro, but as far as ALS goes, that is a pro against it statistically. I don't know what your Neuro's are like in your area...you referenced GP's....but I would find one so you could at least ask these questions and get what else could be going on. Again, there are many things that could be happening that don't have to be horrible.

 

[Travelhealthsci]

Thanks for that Runnergirl, that answers at least a bit of my worries about feeling weak vs actual weakness. I'd consult a neuro for advice but thats even more intimidating than the symptoms and weird BFS stuff - I find the few specialists I've seen about other things tend to not inspire much confidence, or worse - they want to go overboard with serious investigative procedures...

 

[TwitchyMD]

I am no expert but I've done my research. People say that ALS weakkness finds YOU , you don't IT. And pain isn't a saturating symptom of ALS. Painstarts when you have already lost some muscle tissue.

 

[AllGoodHere]

Does not sound like onset of ALS - have you had an EMG recently? Sensations of weakness could be neuropathy. If its gets worse/better during day, it could be myaestenia gravis (if it is general weakness). If I were you I would have an EMG done and the results will show - I would not worry about ALS as you do not have objective decrease of strenght. If you do not have problems with particular extremity or function, it too points away from ALS.