Originally Posted by Jellyfish

Mestinon is awesome for me. If my soft pallet is weak and my throat feels like it's collapsing, mestinon magically opens my throat and breathing is easy again.
BUT lately I've noticed some odd mouth and tongue movements!
I am not aware that I am doing it!
At first, the inside of my mouth, was sore and raw in my cheek area and my lower lip was swollen. I thought I was having an allergic reaction!
The next day all was well but I noticed I was pursing my lips and sucking my cheeks in. My tongue was pushing hard against my teeth, which I gave done for years even before my MG.
Now my mouth is restless and my lips draw back tightly against my teeth and I have no idea that I'm doing it until my churns are raw and swollen inside my mouth.
I googled it and things like dystonia came up. What a scary neurological issue!
So I suck my tongue and do strange mouth things. I can go for a month without needing mestinon and I'm wondering if it is triggering this involuntary movement because it seems to happen after I take it. I depend on mestinon to help me breathe when needed. But I don't want to develop another horrible issue.
Ok I typed all of this on my iPhone so please excuse any typos... My eyes have triple vision now so I'm signing off. Ugh!