Let me begin my story…
In 2009, I was captain on the football team, a long-snapper and linebacker for our team. At the start of the season, I had a bad viral infection and had to miss some of the early games. After one of the games I played in, the next morning I couldn”t remember who had won the game. At school the following week, I couldn’t remember my locker combination or my classes or where they were even located. I was sick to my stomach with vomiting. My parents thought I had a concussion from the football game. The doctors sent me to the hospital where tests revealed I had no concussion.
From then on, things started getting worse. I was driving to school one day, and called my mother and said, “I don’t know where I’m at.” It was a very scary feeling. I knew something was seriously wrong. I started sleeping a lot, had numbness and tingling in my hands and feet and was always cold. Had no appetite and started to lose a lot of weight. I couldn’t stand bright lights and loud noises. My family felt as if they lived in a cave. Started having mini seizures, which doctors thought were anxiety attacks. On Dec. 23, we had a big family gathering and people were taking lots of pictures, which triggered a very bad seizure. I was taken to hospital again where I was sedated and sent home the next day.
My parents finally took me to see our family doctor. He took one look at me and knew something was very wrong. He said all the other doctors were chasing a “red herring”. He sent me to have a couple of tests that came back negative. He strongly advised me to go to the Mayo Clinic. I was seen by a neurologist, who suspected my illness right away. Had MANY tests and was finally given a spinal tap, which I had a bad reaction to. The doctors filmed my eyes which were spinning like no other. I was diagnosed with opsoclonus-myoclonus. I couldn’t walk and had two grand mal seizures and almost died. I was put on massive amounts of steroids. I lost 80 lbs and had to learn to walk again. The disease has affected my eyes, balance, and coordination. But I gradually got better. Now, my vision is good and I continue to get better. Am still on a low dose of Keppra, and some steroids. They have not been able to find my antibody.