I finally was diagnosed with MG after several weeks of intense symptoms & meeting with several doctors. Mestinon 60mg (which I started one day prior to actually being diagnosed at 30mg dosage) seems to take the edge off the symptoms.
The most concerning symptom presently is the sensation of having my throat close. I can feel a lot of phlegm in my throat (slightly lessened, I believe, from mestinon). The throat-closing sensation began when I was lying on my back. It gradually began happening when lying on my right side, then my left side, now it even happens when I'm sitting up to try & sleep. The throat-close sensation is accompanied by a popping sound when I swallow. The popping can be felt as a vibration if placing fingers against my throat. Because of severe tooth grinding that began these last couple months, I've loosened or broken off several crowns & a couple teeth. Ongoing use of a mouth guard at night keeps my jaw weakened & aggravates this problem (that's my theory), although I'm hesitant to stop using the mouthguard due to the loose teeth & crowns.
I've visited the E.R. about the throat closing sensation, ball of mucus in throat & popping sound, but they sent me home having looked at my throat using a tongue depressor & not finding a problem (E.R. visits have twice sent me home -- the first time following several incidences of fluid/saliva aspiration, the second time due to the symptoms I'm describing. They'd assumed I was a hypochondriac when I discussed my concerns about MG & resultantly dismissed the symptoms. (I got the MG diagnosis after the two E.R. visits).
Anyway, my questions.... What should I be doing about this? My existing neuro (who diagnosed the MG) said to take mestinon before sleeping. I don't feel completely comfortable leaving it at that since she's not completely familiar with MG, and the mestinon affect isn't likely to last all night. Is there a type of specialist I should see? Is this symptom overly concerning or par for the course? Is it okay for me to sleep lying down, even if these symptoms hit en masse? I'm getting pretty tired because I've been trying to sleep sitting up until I get some answers. Any ideas or suggestions? Should I just not worry about it? Has anyone else experienced this? What did you do? Thanks!