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Twenty-eight years with MG

My symptoms leading up to a diagnosis of MG began while I was driving East on U S – 36 in Kansas in 1993. I suddenly realized my left eyelid was closed and I was only seeing out of my right eye! There were no other symptoms at that time. Coming to a rest area, I pulled off, closed my eyes for about 15 minutes and was ok for the rest of my drive that day.

More symptoms appeared

A few days later, I was chewing on a steak and found I was unable to continue eating until I rested my jaws for a time. Then, eyelids closing became more frequent and I contacted my doctor. He referred me to an ENT specialist who promptly said I probably had Myasthenia Gravis, and referred me to a Neurologist who confirmed that was the case. The total time from first symptom to diagnosis was around a month. Meanwhile, at times my tongue would not function and there were times with difficulty swallowing my saliva or food. Even ice cream became difficult to eat. For a few weeks I had to hold up my head with one hand while mowing the lawn. They symptoms kept evolving, then disappearing.

My treatment plan & progress

The Neurologist prescribed 80 mg/day of Prednisone and some Mestinon and Imuran. Gradually my symptoms improved and I was able to work my way off of the Prednisone over more than a year of gradual withdrawal. For about five years I was symptom free and off medication. Then the MG returned and I was back on 40 mg/day of Prednisone and 200 mg/day of Imuran. For around a month I could barely speak for more than a minute and I needed someone to drive me around as I could not hold up my head for very long. (I was a salesman on the road selling agricultural equipment.) The Prednisone over time, was decreased to 5 mg every other day and in 2003 I was put on intravenous 500 ml Immunoglobulin every month along with the Imuran and Prednisone. I now receive the Immunoglobulin every 12 weeks and continue to be mostly symptom free. I do tire easily from physical activity, but will be 90 years old in a couple of months, so that may have a bearing on tiring quickly.

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