Myasthenia Gravis

My name is Stephanie, I’m 26 years old, and I was recently diagnosed with Myasthenia Gravis.

I’ve always been a very active person, playing roller derby (which was my favorite thing to do for 3 years), fluttering around like a social butterfly, trying to be a dependable family member, and manager at work. Around October of 2008, I noticed my right hand had become weak. I also felt tired all of the time, and napping became a regular thing, which I never did before. I took a leave of absence from my roller derby league, hoping to regain some energy.

I love to work on and sell crafts. One day while spray painting, I realized I couldn’t hold the nozzle on the spray can very well. I thought it might be from crafting, typing, and even texting way too much. I put it off, not wanting to make a trip to the doctor for something that seemed so small. In March of 2009, I felt like my vision was unstable, kind of shaky. I’ve always had bad vision and have to depend on contacts and glasses to even walk around my house. One night I went to wash my face before bed; I looked in the mirror and realized my right eyelid looked droopy. Maybe I needed more sleep? So I again, ignored it… until I started getting double vision.

I immediately set up an appointment with my Optometrist. He said my prescription had not changed, and that double vision was neurological. He recommended I see an Ophthalmologist. They used various tools to check the muscle behind my eyes, and gave me a temporary diagnosis; Myasthenia Gravis. It was the first time I’d heard of it, so obviously looked it up on the internet immediately. The description sounded spot on. I then put the connection together between my hand and my eye. I cried, especially when I saw that it was incurable. I picked myself up and went on to the Neurologist who started testing me. I got a CT scan of my chest, an MRI of my brain, an Electromyography test, and a lot of blood work done. The only thing that came back positive, were my antibodies. Myasthenia Gravis was then my official diagnosis. I was relieved to have a name for it, but at the same time, I had to make an effort to keep myself from feeling like a victim.

I’m very fortunate that my double vision went away, and that my other symptoms are minimal. I take Mestinon and a large dose of Vitamin D, and neither have had any negative side effects. My family and boyfriend are strong and loving, which can get a person through anything.

Please don’t ignore your body when it’s trying to tell you something. I think my double vision came specifically to push me into finding out what was wrong. It was a blessing in disguise. I promise to never ignore my body again!

I still work my normal 45 hours a week, and although I haven’t returned to the world of roller derby, I still find time to help them in other ways that don’t involve me smashing into someone full force. Besides that, I try to carry on like I did before, but I still nap often, which is kind of nice… more time for dreaming.