Don't Get Frustrated
Last updated: February 2023
I was actually in grade school when I had the first symptoms. I started seeing double after reading for a minute or two or after any activity. In 7th grade, I had eye muscle surgery after being misdiagnosed. This has lead to a lot of problems throughout my life.
Receiving a diagnosis
When I was around 22 years old I bought a house and was working away at it when I suddenly lost eye muscle control. I had no idea what was going on and was driven to the emergency room. I set up an appointment with a neurologist for a couple of weeks later who quickly figured out what it was. I was given the old Tensilon test and at the time myasthenia gravis was not well known and I ended up going through a lot for the next several years.
My treatment journey
Hospitalizations every 6 weeks for plasma replacement, test after test, and lived off Prednisone and Mestinon for the next 5 years or so. I practiced all types of relaxation to keep my stress level down. I finally had the thymus removed via the old method of going through the sternum. I continued plasma replacement for a year or so and gradually came off the Predisone.
Listening to my body
I am now 63 and still have issues with double vision but only a few cases where it was bad. I take Mestinon about once a week as needed and have learned to close my eyes for 15 minutes or so as they get tired. Some mornings I wake up exhausted and go back to bed for a half-hour.
How far we have come
I'm telling this story not to scare you but to share how far the treatment and understanding of the disease have come. You can live a near-perfect life by taking control the best you can of your disease. Don't ever let the disease become the focus of your life.
You're in charge
To this day I have never accepted that I have this. Just my way of dealing with it. My biggest downfall is stress. I try to release it as quickly as it builds up. I kayak, take photography, hike, and do all my own work on the house. You can do what you challenge yourself to do even with the big MG. You are in charge! Keep it that way!
My most frustrating MG symptom is _____.