My GBS Journey
My name is Jeffrey, and I was diagnosed with GBS in May, 1983, and here is my story. When I was 12 years old, my family took a trip from Columbus, GA, to Cincinnati. I was a very healthy jock who was playing football, baseball and soccer. We spent a week up in Cincy, visiting family. While there, my cousin and I got into some poison Ivy, which I didn't break out in hives, but he sure did. After the fun-filled week we drove back to Columbus and I started back in school. We were home for a day when I started feeling strange, like a tingling in my ties and feet. I told my mom that I was not feeling well, but she thought I was just trying to get out of school. Since I missed the bus, my dad had to take me to school. We were walking out of the front door and I took 1 step down our steps and BOOM, my legs gave out and I rolled down the rest of the 5 steps. My dad then realized that I wasn't "faking it," and I truly had something going on, so my dad took me to an emergency walk-in clinic. Well, the idiot doctor told my dad I was just going through puberty. We went back home and my dad sent me to bed to sleep it off.
The next day I felt even more strange, but my mother still thought I was just trying to get out of school. She actually grabbed me by my hair and dragged me out of bed. The fact is, I could no longer walk. Once she realized this she took me to a neurologist. When we got to his office he came out and examined me in the car. After a minute he told my mom to bring me across the street to the ER because he was admitting me immediately for GBS. Anyhow, long story shorter, after 2 lumbar punctures, I was officially diagnosed with GBS. I was now paralyzed from the neck down. I remember having to take breathing tests 3 times a day to test my lung function. Fortunately, my lungs stayed strong enough so I never needed to be put on a ventilator. I ended up staying in the hospital for 3 1/2 months as I slowly got stronger.
It took me about 8 months to finally get strong enough to start walking.....first on crutches and then using a cane for about another 10-12 months. My walking got a whole lot better once I received my AFO braces. As soon as I got them, I felt confident enough to walk without my cane. I wore my AFOs for the next 4 years.
Unfortunately, I still have residual paralysis in my legs and feet to this day. I also suffer from chronic pain and Fibromyalgia due to the damage GBS did to my nerves.
Anyhow, that is my story, and I'm sticking to it.
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