Hi Ness. I understand you are incredibly stressed and anxious, which is made worse by the long await times to see a specialist. I know this must be very tough.
I am a pALS that has been very fortunate to have had slow progression to this point. I also have had both lower and upper GI issues for some time, which has gotten worse since my diagnosis. A while back I also began to experience some of the very throat issues you describe, ie., some slight hoarseness after speaking for a while, a feeling of a “lump” in my throat, slight soreness, feeling a need to clear my throat more often than normal. However, my tongue functions normally, I have no speaking, eating or drinking issues, and no choking whatsoever.
After seeing my PCP and communicating with my neurologist, both felt that this is likely not Bulbar progression, but instead what is known as “silent reflux,” especially given my history. Unlike GERD, heartburn is not really a symptom, thus the “silent” part, but it is still reflux of stomach acid into the throat. Everything you describe and I also experience are common symptoms of silent reflux.
I think it’s probably much more likely your anxiety/stress has messed with your gut and created the swallowing issues you describe than MND.
Best wishes, Kevin