I am sorry for posting again, and dear community, please don’t be upset with me.
I wanted to write a quick update on how I am, and see if any of you could perhaps advise on what I should do next.
A brief summary of what happened so far:
-8 months of bodywide twitches. Sometimes large twitches that move my shoulder, or my head a tiny bit.
-Left leg feels weaker and weaker. Sometimes trembles. Just the left.
-Difficulty breathing. It really is such an effort and makes me so tired.
I can not fill my lungs up. I can’t do a proper yawn. I practice belly breathing and meditation every day and I strongly believe this breathing problem is not because of anxiety.
I reach a point on an inhale when my abdomen just start shaking and I can’t fill it up further.
FVC for the past 3 months have been between 87-93% however.
-Difficulty swallowing. No globus sensation. I have to swallow 2-3 times per bolus and even then some residue is stuck at the back of throat.
ENT examination couple months back was fine except retrograde flow of bolus. Since then I get regurgitation - stomach content flowing back to my mouth- a lot.
-My partner confirmed that indeed having issues pronouncing some words such as “remember”. It is as if the my lips and tounge don’t move to the right place.
-MRI and all blood test were fine. The only exceptions are CK levels which have been constantly elevated. Tested 4 times and it was between 400-1000.
Most recently I have seen an ALS specialist, and a neurophysiologist professor 3 months ago. This was the third EMG which was all fine except fasicultions in multiple muscles.
The only thing which I found strange that the affected leg barely made any sound when I contracted my muscles. And I was trying like there is no tomorrow.
The other, non affected leg made a loud sound on contraction.
I would think this has no clinical significance because it was not mentioned on the report.
Couple of questions, I thank you very much for your patience and your answer.
- Are regurgitation, reflux, stomach pain can be associated with ALS?
- Could respiratory onset ALS present in such manner, that perceived weakness would affect multiple muscles at the same time? (Lungs, legs, throat and mouth?)
- All 4 chambers of my heart expanded vs. 18 months ago. it is just within the normal limits still. I understand heart issues have nothing to do with ALS
I am not chasing an ALS diagnosis but because of the presence of fasiculations and because every single test is coming back normal, with the exception of CK, and I genuinely feel worse and weaker as time goes by, my mind is keep coming back to ALS.
I would mention that I tested positive for Lyme disease by IGENEX. My GP and a Lyme specialist both said this would be a false positive.