Some years ago I experienced isolated incidences of choking and shortness-of-breath - especially after my athletic outings or a long day at work. Double vision, too, would plague me but because none of these things seemed to happen at the same time I never associated these symptoms with anything important. After all, I was 22 years old, worked two jobs (one as a performer in musicals) and was generally very, very busy. I had no reason not to believe the doctors who told me I just needed to slow down and rest adequately.
I had decided that I needed a 'career' - one that would pay the rent when I was between acting commitments - and I took an interest in the medical technicians at the specialty eye hospital where I had my "day job" (you know - the one 'they' tell you not to quit when you're doing financially risky things like acting). After application and acceptance into the program for ophthalmic technology in St. Paul, Minnesota, I prepared to pack up and move from Boston, with plans to return for my outpatient training.
Just 10 weeks after the start of classes, I became ill with a cold. Coupled with the still-not-fully-recovered feeling following wisdom teeth removal before leaving Boston, I was one unhappy camper. I had double vision ALL the time and one of my eyelids drooped almost completely shut. One of my instructors (a doctor) insisted on performing a "Tensilon Test", which was positive for a diagnosis of myasthenia gravis. My neurologist introduced me to the medical library at the hospital in which I trained and had become a patient. He had selected several medical texts with references to MG and said to me, "Here - read and learn. MG is a difficult and UNIQUE experience and you need to know what you'll be up against". He told me to take notes so that I could ask him about whatever I didn't understand later in the day. I was alone in a new city, scared, and very ill but I will never EVER forget this man and the kindness he showed in helping me find a way to deal with MG.
That was twenty eight years ago. Sadly, over the years I have learned that my neurologist's approach is not universal and many people new to the diagnosis of myasthenia have unanswered questions and a solitude that tends to accompany serious life-altering events. I am proud to be a part of MGnet and the technology that can offer an alternative to the people who need it. We LEARN here; we SHARE here; and we SUPPORT here those among us finding their way with MG.
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