Mestinon didn't do anything for me- except cause me to go into a crisis when I was accidentally overdosed by a very well meaning, but in-over-his-head neurologist. My new neurologist has explained that it is important to know if you are you are antibody+ and the type of antibody+ because if you are NOT than Mestinon/IVIG/Plasmapheresis may not always work- and only certain treatments work for certain positive profiles. (I am negative for all three and currently giving IVIG a last shot anyway).

Scrubbs-you brought up a very interesting point about the diaphragm. I always associate my limbs/eye muscles with being fatigued- AKA no big deal- I just overdid it and I can push through it with a good night's sleep and by taking it easy. Recently though I think some of my "involuntary muscles" have been weak- and more than just the typical bulbar muscles, which are always pretty crummy.

My appetite has been really bad and my GI told me he thinks my stomach is so weak that it cannot properly digest hence it takes me much longer to digest and I am losing weight and not hungry (I can feel like I overate for 12-14 hours after a small meal). I am also down to 105lbs (I'm 5'2"). Also my wonderful nurse who administers the IVIG has noticed that when we infuse in the morning my blood pressure is pretty normal but every time we infuse at night it is very low. She is beginning to believe that my heart might not be pumping as well at night and that may be adding to my general feeling of being physically exhausted.

Has anyone experienced things like this?

I must be one of the lucky ones, at least so far. Mestinon 60--3 x day, has virtually ended all my symptoms. I have a small problem chewing sometimes, but not at all like it was. Eyelid problem gone instantly. Only been 3 or 4 mos so far, so hope i'm not speaking too quickly. No thymus problem on ct, but high count on antibodies. Anyway count me happy so far.
Fred

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!

Jellyfish, I suspect that when you get these odd mouth things, you are slightly "over cooked" with the mestinon. If I take mine even a few minutes too soon, I get strange electrical feelings and involuntary movement with my tongue.

On the other hand, I some odd lip movements before I got on mestinon. I haven't noticed them lately. So who knows?