AnnieB.
I should be clear that my self questioning is mine and mine alone. I love my neuro. He has never doubted that there is something going on, and has told me he will be surprised if this does not turn out to be MG. He is NOT an MG expert, which is why he is sending me to the IUMed center for testing next week. ( about 90 min away, I am lucky). Dr Kincaid is supposed to be a well recognized MG/neuromuscular expert.
The biggest things that cause self doubt are 1) I have a MS in Developmental Biology ( although it is not my profession). so I know enough to be dangerous and can read scientific journal articles fairly proficiently. 2) I have spent my entire life in and out of hospitals, as my Dad and Sis both have a congenital dwarfing bone disease. I have atcively advocated and monitored both of them in and out of the hospital, so I understand the importance of being proactive. SO my brain is watching, but then it gets freaky foggy and I get all frustrated ( thus my copious note taking, spreadsheet symptom tracking, etc...).
There are reasons for the second guessing- a) my initial rep stim ( on mestinon, lab forgot to tell me to stop) showed a small ( but over the limit 14%) decrement on my legs, but an increment on my hand. As you know, an increment is indicative of LEMS, not MG. The neuro assured me that it was probably because he made a mistake,( thus the trip to indy), but it lingers there. b) I am sero-negative for both AchR and VGCC. This was surprising to me, as I am sero positive for thyroid ( I have had hashimotos for 10 years) and was expecting this to have popped up as autoimmune #2. c) My mom was diagnosed with MG at age 41 and "fixed herself"- got better, although she now has low level symptms that are neuromuscular but undiagnosed. And in Jan this year I had a daughter with unbelievable fatigue that tested negative for all the normal teen exhaustions and metabolic disorders, but recovered astoundingly well when she went on low dose fluoxetine for mild OCD. We all figured it was a depression fatigue, but then I found you in recent research they are showing recovery of SCC CMS with fluoxetine. With a family history and a life time history of tight/muscle cramping and odd muscle joint exhaustion that was always mysterious or tendinitis Dx,I have to wonder in one part of my brain if this is actually SCC, which would be made worse by mestinon, thus the worry ( not to mention worrying about both of my girls, if this is genetic....)
See- I told you I knew enough to be dangerous ;-)
The reason for the odd dose of mestinon was because I was on 60mg every 4 hours around the clock, but it was only getting me about halfway back to normal. He tried me on 20 mg every 6 hours instead, which was wonderful for the first dose, a little weird the second dose and almost made me swallow my tongue the third dose ;-) I was certainly overdosing at that level. Then we tried 90 mg every 6 hours, and it was good, but when active, I lost it about halfway through. I asked if I could try the extra 30 mg left from the old 120 dose halfway through when i was starting to fade. He said I could try it.
I know that some of my symptoms are from to much mestinon, rather than primary symptoms, but honestly at this point I can not tell them apart, which is why I am attempting to stop the mestinon for a couple of days, really feel the primary symptoms again and then ramp the mestinon up again. I had considered just trying to stay off of it until the 17th for my testing, to be really clean, but seeing how my symptoms are ramping up at only a little after 12 hours off the meds, I doubt very much I will make it that long.
I will go off again for about 2 days before the testing ( based on what happens here)

All of this will be partially resolved by testing next week. I know I need to take more deep breaths, trust in myself and know that one way or another I WILL get to the bottom of this. But some days, it just all spins out of control. ;-)

Sorry to have written a novella, but maybe knowing more info about my case and history helps out.