Can PCP Rx Mestinon? Suspected MG

Hello!

I am new here and I’m so alone with this so forgive me if this is long.

I was wondering if anyone has had the experience of a primary care doctor being willing and able to do a trial Mestinon prescription.

I got so close in 2019 until my doctor (affiliated with a hospital group) went to her laptop and it told her we had to try some other drug first beginning with a C that I know my neighbor took for fibro. The reason I wanted to try Mestinon was to give us a clue. Through my research I came upon MG and it seemed to be a fit and my doctor agreed and appeared excited to try Mestinon, until the gods told her no, which defeated the purpose. I left and never went back. I had already been through the ringer with tests and the usual doctor experiences beginning in 2015 with MAJOR problems.

Fast forward to now and I’ve been in a bad (for me) flare all summer which has worsened to where I cannot do anything without having to lay down after and often fall asleep. After 2 hours or so I am feeling ok enough to get up and do it again. Muscle fatigability. Also my left eye is worse and for the first time I have actually felt it at times. The first time I felt it I looked in the mirror and it was worse than ever. I did the ice test - only for about a minute because I can’t stand it and find it painful - and my eyelid improved. In the past I’ve gotten tired chewing and an episode of slurring. When I was on 6th grade a boy teased me because “one eye is bigger” than the other. Not sure if related but around the same age I had to do eye exercises with a string and wooden balls for my eye muscles because my eyes focused before the page. Not sure if that’s related but I just realized these things and so perhaps this started long before I even imagined. There’s a lot more but I’ll leave it at that for now.

I have tested out as what they call sero negative in 2019 but I do show antibodies. Binding <.03, Blocking was 15 and Modulating was <12. Seriously I’d think negative would mean 0, but call me crazy.

I’ve had brain & neck MRI and regular EMG. I asked the neuro after the EMG if it showed my long-time hand/wrist/forearm weakness to be from my neck, and he said “nope - it’s not your neck”. I was simply flabbergasted since all those years I assumed it was nerve damage from a bad neck herniation I had around the time when that began.

Anyway I‘be decided to put myself through help again and chose a doc near me who I don’t believe is connected directly to a hospital and therefore might have more leeway with prescribing until I can get to a new neurologist. I know this is MG and it’s been a long road and I figured it out myself and I also believe I know what caused it.

😀