Possible Bulbar Onset ALS

[candicem]

About 2 months ago- I woke up with some funky head pressure, derealization and weird neck sensation, of which has gradually progressed into what I would call neck heaviness, almost as if I have a heavy chain around my neck and my head is sinking into my spinal cord. I have a consistent globus feeling in my throat- but haven't had any issues eating.

My heart is acting wonky, serious Palps (cardiology says sinus tachy, and they are not concerned they say likely not the structural issue of the heart but an autonomic dysfunction. However I also feel "air hungry"... my most recent arterial blood glass results showed higher Co2 levels then normal- and a metabolic alkalosis with no concern from any doctor.

I have just recently had an onset on all over fasiculations, non stop, from my shoulders down, and the feeling of muscle fatigue but my neurologist doesn't notice any loss of strength or atrophy. Though I do appear to be hyper-reflexive in both knees. Noise and Light Sensitive as well. We are doing an EMG as soon as we get insurance approval

I am a 40 year old woman, Military veteran that worked on the flight deck, with a husband, and 13 year old boy, and am mildly terrified at this point, and I can not help but fixate on this awful disease of which I seem to fit many symptoms of.

 

[lgelb]

Postural orthostatic tachycardia (POTS) can be a thing in its own right but is also a common downstream issue after Covid. Other subtypes of tachycardia, including the a-lot-of-the-time sinus tach, the same. That in turn can amp up your respiratory demand and make you more sensitive to stimuli as you describe. There can also be an energy deficit with weight loss and of course it's a loop.

Essentially, it's like your body is still fighting off an infection. Generally if sinus tach/palps are troublesome, a beta blocker or calcium channel blocker or another agent would be prescribed, so I would ask about that if not brought up.

I don't think you have ALS, but if your care team is not supporting your clinical needs, I would find another.