2021 MGFA National Conference: Seronegative MG - Why is This so Hard

[@cherylcarlson3315]

Did not watch to the end last time watching this video. Today glad I did. I was ignored when had trouble singing, playing the flute,doing storytelling in the summer,hiking,biking cross country skiing, working, eating etc. Was told was depressed and deconditioned as falls increased. Could not drive manual transmission anymore,was laughed at. Had to use neck pillow, cruise control and drive with left eye shut. Now 1yr on mestinon , breathing better,can walk 10times further,can eat pizza again,doing pulmonary rehab so rarely need bipap and oxygen during day now. This last Neuro says can't be sero neg MG because sfemg was normal. Other antibodies and labs are abn but are meaningless to her. To others on a similar journey, you are not alone.

[@loriscott3290]

I’m being laughed at, too. Glad you got a diagnosis and treatment. I’m 2-3 years in still waiting for Dx. Seronegative so far and have to wait 9 months between visits with neurologists bc they are in short supply where I live and inevitably I’m always functioning a little better when I finally get in. Have resolved myself to fact that I will hv to be VERY SICK before neurology will diagnose. lol, it’s not enough to have double vision, inability to hold head up and fatigue so quickly can’t walk to my kitchen. And yes, I hv drooping lids and trouble breathing, too. Still doesn’t matter.

[@cherylcarlson3315]

@@loriscott3290 wish you could try mestinon, helped so much. That and bipap for breathing breaks. So good. Recently saw study connecting fibrinogen level with MG.. even seronegative. Not accepted yet. Hang in there

[@chronicdiseases6274]

Very good presentation Dr Anwar Hussain

[@gamaltaher9714]

Thanks

[@hmangaihzuali1295]

Mu illness is he woried 😭