Bulbar ALS Anxiety -- How It Started and Where I Am Now

I've been dealing with ALS anxiety for three months now. It feels like every time I start to get over it, something scares me and pulls me all the way back to square one.

It started when I noticed that my arms felt more tired than usual after doing things that were really simple. I now know that's not a symptom of ALS, but it planted a seed. From there, I started to spiral. I felt like my gait was off, that my hands were clumsy and uncoordinated, that I was having trouble swallowing, and of course, I was--and still am--twitching a lot more that usual. I took up lifting to help confirm to myself that my muscles are working as they should, but I'd have days where I felt better and days where I felt worse, but it was always in the back of my mind.

And so it continued to today, where I noticed two things: one, my left hand just started shaking out of nowhere, and it was only my left hand. Fortunately, it has stopped now, but it freaked me out. Two, I noticed that the right corner of my lip won't move like the left. Because of it, my facial expressions are uneven. This is what has freaked me out the most out of everything. I know that ALS is about failing and not feeling, but it seems like I'm failing. I'm not sure what to do.

Does anyone have any advice?

Welcome!

Advice #1: Stop testing stuff :)
Advice #2: Have more in-person interactions with people if possible (especially as weather gets warmer) -- distracts from the hypervigilance and if they don't notice any issues either, chances are there are no issues
Advice #3: Get actual help for your health (and overall) anxiety. Anxiety isn't a malfunction, it's a necessary feature of human-ness -- it's the emotional distress that comes with it that's a problem. Professionals can help you manage that.
Advice #4: (This is the really hard one) Accept that bodies aren't perfect or symmetrical and stuff's going to hurt, be comparatively weaker, smaller, shaky, less mobile, etc. etc.

Re: facial expressions -- me too. And literally every single person I've asked has this too, and usually on the right side of their face. I have a theory about why, involving the fact that the brain processes some stuff more on one side than the other, but it may also involve eye-preference and handedness and other stuff. Long story short: Bodies aren't symmetrical; so long as you CAN make facial expressions on both sides of your face, you're probably good.

Thank you for the response! I'm still in a bad place right now, but I'll try my best to follow these. I'm still worried about these things as it feels rather awkward to smile on the right side, and it is uneven. I want to see a doctor about it, but I'm also trying not to let it consume me.