Living with Guillain-Barre Syndrome

My symptoms started with tingling in my feet. I thought it was because I was on my feet for 10-12 hours a day. I was a restaurant manager, so of course I was tired. Then it moved to my fingers, and I still didn’t think anything because it would dissipate throughout the day.

Then I started noticing “little things.” My forehead started hurting, then my jaw, and it felt like there was something in my throat. Then my neck started to hurt, and I went to the chiropractor thinking I had pinched a nerve.

While I was being treated by the chiropractor I noticed that everything except coffee tasted salty. By this time I was getting a little more worried, but continued to work.

After about a week of being treated by the chiropractor I noticed that it was getting a little difficult to walk in a straight line. I wasn’t sleeping much, maybe an hour a day total, because my body was sore everywhere.

Finally, I was in the shower one day and felt faint. I laid down on the bottom of the tub until I felt my dizziness had passed. When I tried to lift my head I couldn’t. Somehow I got myself out of the tub, and being the idiot that I am, I went to work!!! I was walking with a cane by this time, but I knew now that something was very, very wrong.

When I got to work, I called a friend to take me to the emergency room, and I was admitted immediately. My doctor had no idea what was wrong, and it took 4 days for a diagnosis. I was so weak by this time, that I couldn’t lift my legs. I had a lumbar puncture done and this is how I was diagnosed.

I had plasmapheresis done and after about 3 weeks, I finally started getting better. I was using a walker by this time, but at least I could walk. I am a runner, so it was very frustrating to be using a walker.

I had to have occupational therapy, because my motor skills had so diminished. Physical therapy was so frustrating at first, because my body would not do what I wanted it to do. But I didn’t give up, and was soon motoring around the hospital in my walker, then with my cane, and finally I got to go home after about a month and a half.

This was 5 years ago, and I am back running, lifting weights, surfing, and everything else that I did before I go sick. I still get tired, and there are still some numb spots in my feet and toes, but I think I am pretty much back to where I was.

Thank God for modern medicine!!