Question about tongue atrophy

[Shaverja]

Good evening and god bless all that are here.


I just wanted to ask a question about tongue atrophy as I wait for my appointment with a Neuro muscular specialist. Can anyone tell me how the tongue atrophy’s? My tongue seems to be getting thinner and I can now roll my tongue. This would to some would seam great however for the first 42 years of my life I was unable to do this, and even was bullied as a child because I could not roll my tongue.
I fear this is the beginning of bulbar als. I have had significant issues with swallowing for a little while now and after my neurologist appointment I became more concerned when they referred me to a Neuro muscular specialist and stated they could not offer me any help in their office. This of course led me to great anxiety. Please any answers are appreciated.

 

[Bestfriends14]

What was the reason you were referred to a neuromuscular specialist? Being able to roll your tongue is the opposite of what happens in ALS. What other issues have you had?

 

[Shaverja]

Body wide muscle atrophy, body wide muscle twitching even in throat, muscle weekness, involuntary muscle movements, hyper reflexes in legs , and loss of gag reflex . It actually seems that the back third of my tongue where my taste buds are is thinning or atrophying first as well. Seems like a cranial nerve issue but mri was normal. It is definitely noticeable, espseeings how I had a swollen tongue for two years post Covid infection and then all of a sudden all this symptoms. Thank you for your response.

 

[Bestfriends14]

Thank you for explaining. The great news is that ALS doesn't present at all as you've described. It moves from one body part to the next, not all over all at once. Please come back and let us know what the neuromuscular specialist opines. It helps folks who needlessly worry about a disease they don't have, understand why they don't have it.

Take good care

 

[Shaverja]

I now have foot drop, still waiting on my appointment with specialist. May 17. Why is this process so hard and why does it have to take so long to get from Doctor to doctor?
I guess maybe that is the failure the neurologist was looking for!