Living with Guillain-Barre Syndrome

I have had the misfortune of having GBS not once, but twice in my life.

The first time I was 6 and after some battling with physicians in the emergency room after my second visit I was admitted into the hospital … it was 1976. I spent a grand total of 6 months in the hospital when physicians informed my parents that I was not responding to treatments and in fact the GBS was beginning to affect my diaphram. My parents decided it was time to take me home … if I was to die, I would die at home. It would be almost one year before I could walk on my own once again.

In January of 1994 after a bad bout with the flu I started to to notice tingling in my fingers and toes when I went outside in the cold. I gradually worsened and I saw my physician about it. He did not think that GBS repeated itself in GBS patients he said we’ll wait a week and see how I was feeling (it was a bitterly cold January and the thought was I may have gotten a mild case of frost bite).

When I went in the stingling and muscle weakness was now up my arms and legs. He referred me to the neurologist the next day and in 24 hrs I had zero reflexes and now being admitted into the hospital. I checked myself in and spent 18 days in the hospital.

I was treated with IVGG and on the list for plasma pheresis. I had serious side effects to the IVGG (more like transfusion reactions), and barely missed being pheresed. It would not be until October of that year when I could feel my feet completely … ten months after the initial onset of symptoms.

I bare the “scars” of my GBS … I have thin arms and legs compared to the rest of me. The muscle atrophy was horrible and painful and of all the things that has stuck with me about having GBS the pain of the muscle atrophy is the thing I remember the most … both times. It felt like someone pulling apart string cheese.

For some time after I was a total freak about catching a cold, or the flu. Now, 15 years later I no longer carry that worry. I figure if I become a three time offender I may actually make some medical record. LOL

I was very blessed and fortunate with my two bouts with GBS … it took it’s toll and I bounced back. I am very grateful and loving life beyond measure. GBS certainly brought a lot of things in my life into focus and I learned to put things into perspective.

Life is great now!