In June of this year (5 Mos ago), I had a droopy eye the day of my graduation, and my foot slipped coming up the stairs. My friend had pink eye, so I went to her doc who gave me drops. Droop got worse. A couple weeks later, I went to an eye doc who sent me to a neurologist. July 17 Neuro doc said I present textbook MG. She started me on mestinon and it seemed to help a few days then my symptoms increased 10 fold. I had major weakness in legs and breathing.

Went to ER July 25 and was admitted. IVIG treatments 3 days, clear chest CT scan. Positive tensilon test.

Meanwhile, mg antibodies seronegative. Musk neg, LEMS positive (but doc said it had to be false positive because of the lab that did it so wanted retest.)

I was in hospital 4 days, home 4, back in hosp 3 days with 2 more IVIG and started on Prednisone. Breathing got better, and limping was better, though not normal walking. Went out on short term disability for work.

Doc then increased Prednisone and started me on Imuran. Did second LEMS test which came back neg (after being imune supressed ).

Went to MAYO in Sept for 2nd opinion with the neuro there. I don't know why I thought they would pursue the LEMS angle. They wanted to, but w diagnosis of MG already, they suggested my doc take me off all meds and retest. They did single fiber which was neg (again already medicated), breathing tests which showed muscle issues with intake and exhale, but no other lung issues, and sent me home.

My neuro put me on home IVIG treatments (4 days in a row once a mo) in Aug, Sept, Oct. She just reduced to 2 days Nov 1 and 2nd.

My primary care sent me for a sleep study that showed mild apnea, and leg twitching. She said that could be iron, so did iron study. It was high, and liver enzymes high. Tested genes for Hemacromatosis which was neg. Sent me to a hemotologist who is redoing tests and if they don't go down in Nov then will get liver biopsy in Dec.

In Oct, I really had a good month. Walking almost back to normal, and went back part time to work. In keeping it slow, decided to do one day a week in office, and rest virtual. Good move, because one was hard! I have been back 3 weeks, and can't get more than one day. I had headaches so neuro did MRI which was clear. She put me on amatriptoline for headaches. That has made me feel WEIRD... last week didn't feel like it was my body! She told me to back down on it last week.

Symptoms are worse, and progressed rapidly again on the last 2 days. I can't hardly walk, and am having breathing issues again. I'm so frustrated...

Candi



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