Well, here I am ready to share the story of my journey into MG and Invasive Thymoma.
First, I was 49 when I was diagnosed. I worked in an office. I had had no exposure to radiation or the like. On Thursday, Aug. 18 2002, I was doing a muscle class and suddenly I couldn’t breath. I went home. It abated and Friday I went to work. I thought I was coming down with a sinus infection so the doctor called in a script for an antibiotic. By noon Friday I was seeing double. Monday I went to work and suddenly I could not talk properly and my face felt “melty” and once again I was having trouble breathing. Went to ER. Breathing difficulty again abated and they sent me home. Went to Cincinnati Eye Institute, they said my eyes were good, but I should get an MRI they suspected MS. The MRI showed nothing. I went home and within the next few days I went into full crisis. My vision was double, I could not chew, bite, swallow, or talk. I was almost doubled over as I could not hold myself upright. Neck and back muscles were too weak. My breathing was getting more difficult although it came and went at first. I kept dropping things, my hair was falling out, my left eye was closed, I was weak all over and walking was way too much effort. I seem to have had every symptom there was and I had it bad.
I finally went in to ER again and as soon as the Neurologist on call saw me this time, he knew immediately what it was. I’m glad to say that I made his day. He was so excited to see a case of MG that he called everyone in the place to come see. I spent a week in the hospital and was sent home. I still had the symptoms but my breathing was better. Eventually, they readmitted me and I was in such a state I was in intensive care for a week. They immediately found the thymoma and I had a thymectomy immediately followed by 28 radiation treatments.
That’s how it started. I’ll send the really pertinent stuff, ie. the treatments, meds, experiences, and change of doctors that have led me to this moment later. I’m going to rest now. 🙂