Diagnosed at 13 in 1957
During a family Christmas party, my uncle, an optometrist, noticed something different with my eyes. "Come here Kathryn, let me get a close-up of your eyes."
An unexpected diagnosis
Following his finger movement... up/down, left/right several times, my uncle made a phone call to a professional friend that he knew. The day after Christmas, I was taken to Tampa General Hospital for observation and tests.
My eyelid was drooping and I had double vision at times. Four or five days later after several professionals reviewed my eyes and test results, I was diagnosed with myasthenia gravis.
Remission... or not?
To my knowledge, it only affected my eyes and eyelids. I was given an RX for prednisone. After about 2 years, the symptoms went away.
Fast forward to about age 39, my husband and 8-year-old son, took me to the emergency room. I thought maybe just maybe, I was having a heart attack (turned out not to be the case). I had swallowed a piece of chewing gum and it lodged in my throat.
However, when the doctor came in to ask me numerous questions, I told him I HAD MG but not now, I have no symptoms so the disease went away or so I thought. The doctor said, "Mam, you will ALWAYS have MG."
Symptoms from stress
Fast forward to my present age (77). I have been under stress and depression for a couple of years (off and on) now due to a fire in my home. Lately, my eyes and eyelids feel so heavy, mainly in the mornings. I just don't want to get up for several hours unless I absolutely have to.
Sharing this with my primary care physician, she said "I ran the test on you before and you do NOT have MG, show me the proof that you had MG"...can you believe that??
Of course, Tampa General Hospital does not keep records dated back from 1957 ( I called the records department). NOW WHAT??? Also, the damn bright LED lights from cars, kill my eyes.
This is my story and I am sticking to it.
Have you made any MG-friendly adaptations to your home?