Mysti's Story

It's been 26 years since I was diagnosed with Miller Fisher Syndrome. I was a junior in high school, only 16 years old. I played on our varsity girl basketball team. We were in the state playoffs when I started having problems. I developed a bad sinus infection which wasn't unusual since it was Spring in South Carolina. I was put on an antibiotic and Sudafed to help with my nasal congestion.

The week before we were to play for the state championship, I got very sick. My eyes were sensitive to light, the inside of my nose felt raw with every breath I took. I was tired and achy. I went to a doctor who thought perhaps I was having an allergic reaction to the Sudafed, so he had me stop taking it. When I left his office, I had to wear special sunglasses because my eyes were so sensitive to the sun. I continued to get worse and started developing tingling sensations in my hands and feet.

I had one dream growing up...and it was to play in a state championship basketball game. I'd worked so hard for the opportunity. So, against everyone's better judgement, I went to the game.

On the way, my team stopped at a steak house for lunch. I remember not being able to cut my coordination, fine motor skills and muscles were starting to deteriorate. I was embarrassed, but asked a friend to cut it up for me.

We arrived at the basketball coliseum, and when I ran out onto the court to warm up, I started seeing double. I had to go sit on the bench. Then, my sinuses hurt so badly, I held a towel up to my nose to breath through. Anything to warm the air that seemed too cold and painful. I didn't play in the game, of course. Afterwards, we stopped at a restaurant again and I couldn't get out of the van. I just laid in there crying because my hands and feet hurt so bad. It's like they were frost-bitten. I finally stumbled my way into the restaurant, grabbed a waitress and had her help me find my mom. She took me back out to the van and held me rubbing my hands and feet until everyone was finished with their meal.

The next day, I had to hold onto the walls when I walked through the house. I was seeing double, everything was blurry, and I couldn't pick up a beverage with one hand. It took both hands and they were very shaky. I also noticed I couldn't swallow food as easily. I would have to take a sip of tea after every bite. I think that's when mom finally took me to a neurologist.

He didn't know what was wrong with me. He was thinking brain tumor, stroke, etc. He admitted me to the hospital as soon as he saw me. Five long days went by while they tested me for everything under the sun. And it was all excruciating. Especially the spinal tap. But on the last day I was finally diagnosed with what they called Guillain-Barre Fisher Syndrome.

They basically said my body had done this to itself and would have to heal itself...and they sent me home. No meds, no therapy, no support. Nothing. And we didn't have the internet back then! I left the hospital in a wheel chair. Eventually moved on to a walker, then a cane and finally was able to walk on my own about a month or so later. When friends would send me cards or letters my mom would read them to me. I would watch tv with one eye covered. But, that was really difficult since my eyes would get tired. It took what seemed like forever for my eyes to go back on track, so to speak.

But I eventually got better and even played basketball my senior year. Twenty-six years later, I still wear sunglasses every time I walk outside. And going from light to dark is no better. Either way leaves me kind of blind while my eyes adjust. Also, I have no reflexes in my arms and legs. I have other health issues that could be linked to MFS, but I've yet to find a doctor that was willing to run lots of tests on me.