Additional symptoms

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Jbarn

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I have new symptoms and would like some opinions. First a little background. Muscle fasciculations since December 2019, 3EMG’s, first April ’20, May ‘21, and September ‘21. The 3rd EMG was done because the neuro surgeon told me that a MRI of my brain, cervical, thoracic, and lumbar spine, could not account for my fasciculations and swallowing issues. Blood work has consisted of thyroid and vitamin deficiencies, all normal.

During the 3rd EMG, the neuro told me that she was unable to reach the area needed to check swallowing, so she checked a facial muscle instead. Five weeks after the EMG my jaw went spastic on the left side while eating, it was so stiff I could barely open it. Since then, the muscles get tight and tired while eating and it makes the jaw hard to open all the way. I made a follow up with the neuro concerning this, and once again the swallowing, and instead of testing the muscles, she spent over an hour trying to convince me that I did not have als.

She told me I had been seen by 2 MND specialist with decades of experience and years of training, so I should trust them. As far as my jaw, she told me to go to a dentist, as for the swallowing, she told me to see a GI doc. I did see an oral surgeon (haven’t seen a gi yet) who told me it sounded neurological to him (he also let me know he had 26 years experience). I told the neuro, she said her opinion was not going to change.

Two weeks ago, a couple of people I work with mentioned they thought they heard me slur some words during a conversation we were having. I had noticed I was having issues before that, but never mentioned it to anyone. I find myself being stopped in the middle of certain words because my mouth, tongue, etc. cannot change position fast enough to keep up.

Additionally, Its difficult for me to make certain tones that I once could. Example, I used to be able to do a pretty good Kermit the Frog impression, but now, it may take 5, 8, or 10 tries just to get my voice to make the tone. Additionally, it takes a lot of effort to make the tone, where before, it didn’t feel as though I was straining the crap out of my throat.

Lastly, swallowing is only better if I use carbonated or warm beverages, and with that, my two questions.

1. Does this sound like bulbar onset?

2. Should I trust the neuro and try to find other causes, or, pursue another neuro who will EMG the areas for swallowing, chewing, and speech?

Thanks
 

lgelb

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We covered this in your last thread, where we agreed you needn't worry about ALS. That advice still holds.

I'd find a dentist who specializes in TMJ dysfunction or who prescribes night guards (some good general dentists do this). An oral surgeon is not the same thing.

The answers are no and yes, see a dentist about a night guard. You had a normal EMG last month, the third of three. It's not about what muscles they tested, it's about the fact that they were all normal. If a neuro actually spent an hour "trying to convince you" that you don't have ALS, don't you think the evidence is pretty clear on that point? You have no facts to the contrary, only fears. Do consider help for this anxiety in concert with the dentist. No More Panic is a good online forum.

We are still done. Closing this thread. Please do not start another.
 
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