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Shatzie

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For those of you who have bulbar-onset ALS, what do the fasciculations feel like? I continuously feel a mild sensation like "Pop Rocks" all over my tongue, along with slurred speech, trouble swallowing and chewing, and foot drop.
 

Jamiet

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I am not diagnosed with anything, but i have the same feeling on my tongue. It's like a vibration, mostly felt at night.

Does your tongue twitch? It's likely fasics.

have you seen your neuro yet? YOu should point this out to him? Did he notice the tongue fasics?
 

mamaoftwo

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I am un-diagnosed as well thus far but also have that sensation. Sometimes it is like space dust or whatever it is called - tingling on the surface and other times it I actually feel the fasiculations.
 

qualitybabe823

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Pop rocks is exactly how I describe it, I get it in my tongue and in my throat.
 

vmd

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The sensation I have is as if I have something in the back of the throat that I feel when I swallow.

Shatzie:

Have you seen a neurologist yet? I'll keep you in my prayers.
 

Shatzie

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I saw my neurologist today for the second time. He ordered blood tests on the first visit, and they were all negative including muscle enzymes and tests for MG. So I will be having an EMG on 1/14. He said it looks like we are heading in the direction of neuromuscular diseases, and wants to wait until the EMGs, but will probably send me to Baylor or Mayo in Scotsdale after that.
 

CindyM

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i hope they find an anwser soon, Shatzie and I hope it is anything but ALS. Cindy
 
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