2012 – While driving one day, the white lines on the road seemed to multiply and I wasn’t sure of the lane I was driving in. Shook it off and went home. The next day I was playing golf and while looking down at the ball noticed that there were 2 balls… not a ball and a shadow but 2 balls. I had to reach down to determine which one was real.
Since I was experiencing vision issues I went to an ophthalmologist. She sent me to a neurologist. Neither doctor knew what was wrong. After multiple visits the ophthalmologist sent me for a blood test which provided her with the information to properly diagnose me with ocular Myasthenia Gravis. She said I should take the test results back to my neurologist – which I did.
The neurologist prescribed 40mg of prednisone and 60 mg of mestinon 4 times a day. My symptoms went away. The doctor weaned me off the prednisone and after a while the double vision returned. He increased my mestinon to 120mg 4 times a day and my double vision ceased.
I was on the medication for a few years, no more double vision, and continued all my activities as before. I did not think about MG or was concerned about it. Subsequent follow ups with the neurologist consisted of checking for arm and leg weakness…there was none. I was fine.
But in October 2015, I started to have some swallowing issues. Nothing too dramatic, just sometimes I had a problem swallowing a piece of food and I would regurgitate it to clear my throat. Planning on going to see family in Colorado for the holidays I self prescribed some prednisone for myself.
No big deal, right?
I developed a cold but still flew to Colorado. The temperature when I boarded the flight in Florida was 87 degrees; when I landed in Denver it was a mere 6 degrees.
Over the next 24 hours my swallowing became more difficult, my cold got worse and eventually I had my daughter take me to the ER. While answering questions checking into the ER my voice started to slur to the point that I was not intelligible. I was admitted into the ICU with pneumonia, and because I told the ER doctor I had ocular MG, he had a neurologist see me. By then I could swallow nothing, speech was labored and my oxygen level dropped.
Although they attempted to give me medication with apple sauce, pudding, etc…. I could not get it down. They eventually put a tube down my nose into my stomach to provide me with medication and nourishment. I fought off being intubated and kept my oxygen level up to an acceptable level. I then had IVIG every day for 5 days, they gave me 120 MG of prednisone (and told me to go off it when I left the hospital), 1000mg Cellcept 2x a day and gave me antibiotics to fight the pneumonia.
I remained in ICU for 7 days and a regular room in the hospital for another day. MG was no longer no big deal. I rested in Colorado for another week before flying back to Florida.
Since then, I am now on 20 mg prednisone and still on the 120 mg Mestinon 4x a day as well as the Cellcept, I see an MG specialist and am plugged in to a local support group.
I feel I have a new normal now. I play 9 holes of golf twice a week, limit my other outdoor activities and rest when I can. I eat softer foods, and much slower. I have not had a steak since 2015, as my chewing gets difficult after a while. I also eat earlier than I used to. (Nothing but soft foods, i.e. pudding, yogurt, etc. after 7pm.) When I look at a menu, I do not look at the description of the food as much as thinking about how chewable it is and whether or not I could swallow it.
There are some days when I just feel weak. Since I am retired – and no commitments to speak of, I am able to take those days as my body needs me to and just take it easy. I limit my evening activities and sometimes will be out with friends and just participate by listening. Whereas I was once the center of attention, dominating conversations I now limit my talking in the evening. I still sometimes have slurred speech but nothing I can’t deal with.
I have MG and am very conscious of it.
I think before I act and live with a “new normal”.
MG is no longer just no big deal.
– Stan Kotzker, Myasthenia Gravis Warrior
Story edited by: Rebekah Dorr