Seronegative MG

Myasthenia gravis had been a background disease for a good portion of my life until I was roughly 45. I sometimes wonder if menopause was the trigger.

Powering through...

The last summer I worked as a school bus driver I was exhausted by my afternoon run and lived on coffee drinks. I moved to Florida where the summer heat laid me out, I was exhausted too. Still, I ran a boarding stable for 10 or so years, fighting it each summer.

Until a diagnosis

I was finally diagnosed when I went to the neurologist for a sleep study. By then I was on a cane as another doctor ordered a heart stress test and the dye they used exacerbated the MG and it attacked my leg. Fun!

Crisis time

I left Florida for Oklahoma to be with my son and his family. Things were okay for the first few years with a good neurologist. Then came the crisis... I was not breathing for 11 minutes. Thank God my son was there to call them! And, no I don’t remember anything while dead, sorry.

I spent that summer in rehabs, and then hospitals when lesser attacks happened, dodging COVID-19 as I went.

My current situation

I’ve been in an assisted living home with my cat for about a year now, learning about this, and am now about to move into a fantastic place in Asheville, NC. My daughter and son-in-law live there and have wanted me there for a while. In fact, I just got back from my final acceptance visit.

My question is this (and I hope there’s an answer): If I have seronegative MG, then what the h—l is attacking me? Do they know? Is there anything besides Prednisone, Mestinon, and Imuran? They’re helpful but not reliable.

That’s my story. And thank you for this site! It’s been most helpful!

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