Saw my wonderful internist at the teaching hospital I go to. She had been away so I was seeing her student allowing a number of things to get messy and ignored. My daughter who is so scared and I just focused on relating to her how much worse I am. She quickly agreed to refer me to the other muscle neuro for a second opinion. This person far more experienced.
Currently I am only on tiny doses of mestinon as my tolerance for it changed after the first year on it. When I was given prostigmine injection in the Neuro optho department it worked like a cure!! I asked to try it. But the pill after a few days tho did all the right things started to make me sick in a way I have with other pills (I think something is broke that hasnt been found yet). I got alot worse in March so with the new doc I am hoping for some new options.
My pulmonologist valled as I had sent him a message about all this and he had some ideas of more tests they can do. My breathing is one of my worst symptoms. He is a great doc too.
Annie59