Kathy's Story
Kathy’s journey to a myasthenia gravis diagnosis took 15 years and countless tests. These days, she is often caring for her elderly relatives, and finding joy in music through her flute and handbell choir. Support from Kathy’s medical team, family, and MG friends has made all the difference.
Kathy’s Story
My name is Kathy, and I’m a retired medical research technician who had to make a career change to a desk job due to my illness. I like to work a little every day, and I play flute and am a member in a handbell choir.
Like many, my journey to diagnosis was very lengthy and difficult. Initially, I was tested for multiple sclerosis and a brain tumor. I have negative electrophysiology testing and am seronegative for all antibodies currently available. After 15 years, I have a tentative MG diagnosis due to my dramatic response to Mestinon.
My day is planned around my morning doses of Mestinon, which is my only treatment. I eat, take my medication, and go for a walk in cool weather. I look after elderly relatives, so I plan their care around my own medication schedule. My husband does most of the cooking, as that is difficult for me.
My good days and bad days are considerably different. A good day means I had a decent sleep, and I can do more things the next day. On a bad day, I rest a lot, under a fan in hot weather.
For me, good support means having an understanding medical team, friends to chat with who have MG, and other friends and family who understand my limitations and help me find accommodations that work.
Margo Thompson has been especially helpful to me during my MG journey.