Living with Guillain-Barre Syndrome

I feel like an old veteran reading the stories of those of you who were attacked by GBS recently!

In 1963 I was in college when I had a flu shot. About a week later, my left arm and leg felt funny, starting from the bottom and rising up; when I began to drop things, my roomies suggested it might be time to go to the infirmary. The nurse had no idea what was going on and said I should call my parents. I can still recall standing at the pay phone trying to tell my mom that my left side seemed to be getting paralyzed.

Within 2 hours my dad was there (normally about a 3-hour drive!) and drove me straight to Lankenau hospital outside Philadelphia. I spent the night in an oxygen supply closet - maybe they were afraid I was contagious. In the morning I was extremely fortunate to be seen by their top neurologist, who immediately suspected Guillain Barre. A spinal tap confirmed it and I spent 2 weeks in the hospital.

Every morning I was asked to smile so they could tell if the paralysis was rising more, but I was fortunate that it never even got to the respiratory muscles. In those days there wasn’t really any treatment except to support the body while the paralysis played itself out. It was very scary.

My mom came every day to feed me lunch, and my grandfather or his wife came to feed me dinner. One nice thing about hospitals in those days was that you got a soothing back rub every night before going to sleep. It somehow made me feel safe even though I didn’t know if I was going to die or be paralyzed for life.

The day I left the hospital, my doctor told me he had just admitted a new patient who had both GBS and mononucleosis. With the rarity of GBS in those days, he was quite surprised to have 2 of us in one month.

I spent a lot of time at home recuperating, and by the time I went back to college things seemed to be back to normal. It wasn’t long, though, before I discovered that I did have residual problems in my left knee. It’s caused a lot of falls and injuries, but the weirdest thing is when it disappears. I feel as if I looked down at it, there would be a big chunk out of the front of the knee. Nobody’s been able to explain that!

I now suffer with fibromyalgia - widespread pain that moves around and changes in intensity. Looking back at the events after my bout with GBS, I think it was a trigger for the fibro, and the repeated injuries from falling because of the left knee have just made the fibro more intense.

Despite the paralysis and the fear it generated, and the problems it left me with, I feel very fortunate that it was not worse, and especially that I happened to become a patient of my doctor; most doctors at that time would not have recognized what was going on. It was not until 13 years later, after the swine flu scare and subsequent increase in the number of flu vaccinations, that GBS became widely known.

I didn’t have to worry that time, because I haven’t had a flu shot since 1963!