Bulbar Onset confusion

[twinfish]

Hey everyone

30 Year old male. One year ago started noting swallowing issues and hoarse voice only with alchohol. Stopped drinking alcohol. Began aspirating with meals. Ignored symptoms. Referred to ENT, nothing wrong. Then began to have fasiculations everywhere (quads abdomen, buttocks, face, neck, back). Noticed having difficult time with high level athletics ( specifically water skiing).

Saw neuromuscular neuro with EMG which showed chronic denervation in right calf. Stated benign etiology. Since then swallowing study ordered by different doc confirms abnormal swallow with pharyngeal muscle weakness ++ aspiration risk . Voice is getting more hoarse and weakness appears to have spread to shoulders and back on both sides.

Do you guys think it is reasonable to push for the neuromuscular doc to see again? They just brushed off the swallowing stuff as unimportant but it strikes me as odd as this was the original symptom

 

[lgelb]

What did the doc who ordered the swallowing study present as the differential(s) to be ruled out or next steps? S/he should liase with the neuro if really concerned.

In all likelihood, swallowing difficulty that is exacerbated by alcohol is its own thing. Fascics that EMG shows as benign are typically their own thing as well, though anxiety, dehydration, etc. can make them worse. No one seems to have any reason to connect them from what you have said.

I would return to your GP and be worked up for systemic disease just in case and treat whatever/however the swallowing study doc recommends. If none of that slows progression or yields new info, knocking back on the neuro's door would be reasonable.

Best,
Laurie

 

[affected]

A hoarse voice is not a bulbar ALS symptom, and twitching means nothing.
Who did the swallow study? That doctor should have made recommendations as to what the next step should be, so maybe work with that doctor. There are more reason for swallowing issues than ALS, so let the doctors work this through with you.
I do hope you find the cause soon.

Did you read this post? It will help you a lot too.

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