Living with Guillain-Barre Syndrome

I was diagnosed with Guillain Barre in 1976 while in the Navy. It first began after a very bad case of mononucleosis, one that required hospitalization. I ran a high fever for several days and finally the fever broke and I was discharged. I was sent home on convalecsent leave to recover.

I remained very tired for many days after being home. It started with a tingling in my fingers and toes. Eventually it started affecting my legs. Having just had mono I thought it was related and ignored it. By the time I finally got to the hospital, I could hardly walk. My wife and friend carried me across the parking lot to the ER.

As it turned out it progressed and finally ended up paralyzing me from the waist down. the doctors put me in ICU and were ready if it worked its way to my lungs. Thankfully, it never did. It took me over 3 months to somehwat recover, but I don’t think I got back to normal 100% after it.

31 years later, at the age of 53, I began having the same symptoms. I started re-living the horror again in my mind and started thinking about my will etc. They put me in the hospital and started performing all types of tests, including spinal tap, eeg, ekg nerve conduction studies, emg, not to mention CTs, and MRIs. They also started treatment with IGG, which I must have responded to because the symptoms started going away.

Although Guillain Barre Syndrome is still a mystery and there is no cure per se, I just wanted everyone to know not to lose hope, because with new technology, having GBS is not as bad as it used to be.