Last updated: May 2023
In 2016, I began the year with prostate cancer surgery. In June, my father died. In July, I experienced ptosis. An ophthalmologist diagnosed a nerve that would improve. It did.
Seeking a diagnosis
In November, after a long road trip, the ptosis returned, followed by diplopia. I returned to the ophthalmology department and a rather astute resident diagnosed myasthenia gravis. In anticipation of the December appointment, I started combing the Internet and came across the diagnosis.
When she, validated by the department chair, rendered the diagnosis, I lost my composure. The chair immediately turned to my wife and emphatically told her not to delay any emergency referral if I experienced certain physical symptoms. My wife’s widening eyes are something I can never forget and now provides us with some humor.
MG was confirmed
A rush of bloodwork validated the clinical diagnosis. In January I was seen by Neurology and prescribed Mestinon. It worked… for a year. Then I submitted to a high dose of prednisone, and it worked. I lost weight but not without a lot of discipline (I am retired Army).
My dose is now at 13 mg, on alternate days, and so far managed. I do occasionally feel an ocular tinge familiar to ocular MG patients and remind myself to take things in stride.
I never thought I would get this… who does? In one sense I feel fortunate that I received this diagnosis late in life. My heart goes out to that cohort of MG patients much younger but I also remain optimistic that a cure or treatment will emerge.
My most frustrating MG symptom is _____.