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.

By providing your email address, you are agreeing to our privacy policy.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Myasthenia-Gravis.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Join the conversation

Please read our rules before commenting.

Community Poll

Have you taken our MG In America Survey yet?