My name is Irene and my relationship with Myasthenia Gravis started on the Labor Day Weekend in 1979. At that time I was 48 years old, happily married, had three children (two married and one at home), and was secretary for a local company.
It was that weekend we went camping at a campground near Clarion State Park in Northwestern Pennsylvania. The weather was warm and you could feel the change in the air from summer to fall. The campground was packed with lots to do – swimming, a campground wiener roast, square dancing on the pavilion, craft lessons, horseback riding, and many trails to walk. It was a fun weekend!
Packing to go home, I felt so tired. I was glad to get home, take a shower, and go to bed. I felt extremely tired all that week so I made an appointment with our family doctor. I was told that it was nerves and stress. When driving home, I momentarily saw two roads, one on top of the other in front of me. “What the heck is happening?” The same thing happened that night while I was watching TV – two TVs. “What’s going on?”
I made an appointment with my optometrist and was checked for a brain tumor then was referred to an ophthalmologist. Nothing was found but I was told I had diplopia. I already knew that and bought eye patches so I could see without the double vision. I gave up driving.
For the next 8 months, I experienced strange things happening. At times, I could not chew solid foods so I bought baby food to have available when that happened. I would drink water and it would come out my nose. I could not swallow. While typing, my fingers would stiffen and I could not bend them. My voice would slur. I prayed to God every day that a diagnosis would be found for my issues.
During these 8 months, I had many appointments with specialists upon specialists, even a neurosurgeon. Same diagnosis – stress and nerves. How could it be? I lost my faith in doctors. Why wasn’t there an answer? A few months ago, I was a healthy 48 year old woman enjoying life.
In the meantime, while I am having all of my issues, my oldest daughter is a nurse in the ICU at our local hospital and discussing my problem with a doctor of internal medicine. He told her that he would like to see me. It was at his appointment that I first heard the word Myasthenia Gravis. He prescribed Mestinon and I took my first pill on April 20th – our 29th wedding anniversary. It was like heaven. I threw my eye patches away and I could drive. That little white pill did the trick. My prayers were answered.
The next two months kept me busy. My youngest daughter was getting married so I had a ton of things to do but one Sunday morning I woke up with such a slur in my voice, you could hardly understand me. I called my doctor and he told me to meet him at the ER in 20 minutes. I was admitted to the hospital. He then told me he didn’t know how to further treat me and made an appointment for me to see the doctors at the MG Clinic at Mercy Hospital.
My first appointment at Mercy was with Dr. Guy Corsello, a most compassionate doctor. He hugged me and said “Honey, you have it and we’re going to admit you even if you have to go through the ER”. I was admitted. The next morning, a doctor walked into my room and introduced himself as Dr. Blume. He spent so much time with me that morning explaining the MG disease with no medical terminologies but in plain language. He told me I was too old to have a thymectomy but they had a new treatment that consisted of a large dose of prednisone and mestinon. He explained it would make me so weak that I might be put on a ventilator. He was such an informative and caring doctor. My treatment went very well – no ventilator. I was discharged and had appointments four times a year, then three, then two and finally I was in remission. Over the years, I acquired a moon face and a distended stomach that made me look five months pregnant. I didn’t care how I looked; just glad to know I was back to normal. Eventually, being off prednisone, my face and stomach went back to normal.
In February of 1992, I retired, still in remission, to take care of my then ill husband. He passed away in November of that year. I had a lot of time on my hands so I did volunteer work at my church, joined a class of water aerobics at our “Y” and could even swim a couple of laps without tiring. Life has been good to me.
I am now 93 years old. Having MG has brought my family much closer. I enjoy our family vacations and had the pleasure of seeing my grandsons grow up and now they have given me eight beautiful great grandchildren. Makes me happy. My prayers have been answered.
A couple of years ago, my youngest daughter had a coworker who had a 90 year old mother having trouble swallowing. My daughter suggested she tell her to be tested for MG. Sure enough it was MG. Everyone in my family is aware of MG’s symptoms.
My thoughts go back to my many appointments with doctors and their diagnosis as nerves and stress. They were right about nerves. Back in 1979, MG was very rare and it still is. At the present time, they say there are 83,000 plus cases in the USA which has a population of over 300 million. Needless to say, it’s a rarity.
