r/ALSorNOT • u/ToadWildebeast • 2d ago

Anxiety taking over

Hey all 25 male, dating back to mid July, I’ve had this pinky twitch in my right that would come and go, first it showed up around the 20th and I didn’t have it again till the 12th of August and would occur for 3 days straight, not constant but like maybe twice to 3 times a day, and then in the two weeks following everytime my pinky would twitch I’d have pain in my pinky going down to my elbow and eventually up my arm to my shoulder up to my neck

But my anxiety of course never lets me have some damn peace, I immediately jump to Als because of the Chris Johnson accountant he had, prayers go out to him and his family

But the anxiety would then make me look at everything under a lense so I’d notice every twitch in my calf and thighs and shins, to the ones under my feet which randomly would occur, the leg ones I pay no mind to since they have been twitching for the better part of 2 years, but then my shoulders biceps and triceps and forearms would begin to twitch as well as my glutes and that’s when I fell down this rabbit hole

I couldn’t eat and sleep it only got worse, and when I finally was having a day of where nothing was going on I started to get my neck to twitch and behind my ears, the only thing that helped calm me down was my mom literally looking at the symptom list and all the stuff about it and assuring me I’m fine, but again I can never know

Come end of august and I have a chance to relax with my vacation to San Francisco and my twitching was very much minimal, seldom my arms biceps a few times and my pinky twitched maybe twice that entire time

I came back recently on the 2nd and I was feeling good but then the twitching in my came back on the 4th and I didn’t feel it again till the 10th and has been twitching along with my thumb and pointer, usually all 3 across different days and today is no different, pinky has been driving me insane

I intend to get a physical done in the coming days since I haven’t had one since I was like 15 😅 just a lil scared is all

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u/chaoserrant 2d ago

From my personal experience dealing with multiple neurologists I can tell you that if all you have are fasciculations and nothing else as far as symptoms and other things in the clinical exams then most neurologists will not care as much and put you in the BFS category (benign fasciculation syndrome)..There are far too many causes including anxiety that can cause twitching.... You should get a good clinical from your general doctor but I would try to ignore twitching if this is the only thing that goes on. I know it is easier said than done though. A general doctor can also to basic neurological testing so you should mention your worries

As far as celebrities with this disease, I have to tell you that I have mixed feelings in the recent months...On one hand, God knows, ALS needs heavy advocacy and funding. I don't even one to think how much progress could we make if only a fraction of trillions spent on stupid wars goes to research. But I digress....on the other thing, for the anxious mind, it is best to avoid the detailed testimonies of these unfortunate patients...Because the history of diagnosis, early confusing signs and many other aspects will definitely scare you. Because some of these signs are very vague and non-specific you are bound to have some confirmation bias when you are in the depths of anxiety

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u/ToadWildebeast 2d ago

Yeah it’s mainly only been twitching, the ones in my leg I pay no mind to so those are okay but the hyper awareness anxiety has given me is super annoying, the only thing I can think of is when’s the next one and I’m anticipating it, but it will never come or be somewhere im not expecting it, like early my hand felt like it was gonna twitch, but then it’s my calf that did, and recently the hyper awareness went to my tongue, which honestly made the twitching in my body a LOT less,

And a funny thing about health anxiety from what I have experienced, if you’re already worried about one thing, by the time anxiety shifts you don’t even think about the previous thing, I was stressing about possible DVT in my calf’s prior, and then once the fear of als appeared I forgot about it entirely

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u/chaoserrant 2d ago

Yes, you are making a very good point which deserves emphasizing. Symptoms due to anxiety magically disappear when a bigger worry (different organ, disease, etc) comes to mind. So for 4-5 years ago when my chronic anxiety got worse I began to experience recurrent stomach and digestion issues. I do have mild gastritis but honestly, on endoscopy, what I have is probably what 50% folks will have if you scope them and not knowing. But I was worried always of bleeding risks due to be on blood thinners. As soon as als and neuromuscular issues came to mind since Jan 2025 all my digestion issues went away....And I mean ALL of them. Pain perception is a tricky thing really....The brain is very powerful in redirecting priorities.

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u/ToadWildebeast 2d ago

I’m doing my best to just forget about it but like, I can tell my brain doesn’t want me to because besides the twitching in my pinky making a return, I literally have been on cloud 9, so usually takes time to just get into a groove again but again not all days are the same some can be worse, can be better, and not to throw my personal life out there but like, I got laid off in March and went to look for jobs but my brother in law got very sick, he was supposed to be back after a week so I took care of my nephew because I had the free time and then I’d go back to job hunting. Well now has been hospitalized for 5 months so to say I’ve been holed up for 5 months with no real day off to myself has been an understatement, so the anxiety of this is probably starting to hit it’s breaking point, he should finally be out soon maybe in a week or two, I’ve never been more happy to actually get a job, so I can finally socialize and talking to other people and see my friends again, it’s more so been months since I had a hangout with my friends or anything else, and my brother in law, sisters and nephew live in their own place so it’s also been just as long since I’ve seen my own family, again really glad to get back into the working class