http://www.raredr.com/news/myasthenia-gravis-road-to-diagnosis
Myasthenia Gravis: The Road to Diagnosis

Mathew Shanley

Anaya Mitchell was diagnosed with myasthenia gravis (MG) in the Summer of 2013. She was 13 years old.

Mitchell was referred to Rare Disease Report by the Myasthenia Gravis Foundation of America (MGFA), and in this video, describes the challenging road she had on her way to diagnosis.



Mitchell: Some of my initial symptoms were weakness in my legs – I was an athlete at the time, and I played softball and basketball. Running up and down the court was very important and, a lot of the time, I would fall, and I’d have to kneel on the court for five or ten minutes because I couldn’t raise myself back up. In softball, I couldn’t run bases the way I had previously been able to, so it was starting to become a really big issue. My parents decided that we were going to go to a couple of different doctors, but we didn’t really get any of the results we were expecting.

Our first doctor, he said that it was a result of me being “overly-emotional,” and that my emotions were playing out on my body. The second doctor said I needed therapy. The third said that I was having seizures and that I needed to be put on seizure medication immediately. I knew, at that point, that wasn’t what it was. I wasn’t getting any better. I wasn’t improving at all. I told my mom, “Okay. I just want to go to one more doctor. After that, I’ll do whatever anybody says.”

We went to a doctor in Overlook Hospital, and within five minutes of talking to him, he told me what I had: he was like “You have myasthenia.”

It was interesting because symptoms like not being able to swallow, or my jaw not working properly were things that I hadn’t really noticed before until he had asked me. He was like, “Do you have trouble with your jaw?” And I was like, “Yeah. I do.” He was like, “Do you have trouble swallowing?” And I was like “Well, now that you mention it, yes.” He said we were going to run some tests, but he was pretty sure he knew what it was.

That was July 5, 2013.

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