I am so excited to join the group. I was diagnosed back in 1982, when I was 17. My symptoms began on a Friday evening with tingling in my fingertips. By Monday my hands and feet were numb. I thought I was getting the flu. On Wednesday I was feeling weak and went to the doctors. I was told I had a virus, that sometimes a virus could cause numbness, go home, rest and drink plenty of fluids. By Thursday I was too weak to come down the stairs without help and I started to have difficulty swallowing. On Friday I was significantly worse, I could not stand or walk and my facial muscles had begun to sag. I was taken back to the Dr. They were unable to get me out of the car when we arrived so the Dr came to the car. He took one look at me and told my mom to take me straight to the hospital and I was immediately admitted. Fortunately for me my Dr realized that he was in over his head and called a neurologist.
When the neurologist saw me that evening I was unable to move at all. He examined me for quite some time. They drew spinal fluid and performed some other tests. He then told us he was fairly certain that I had Gillian Barre Syndrome. He had just returned from some kind of convention and had seen a presentation on GBS. What were the chances? As my symptoms were progressing rapidly, he had me moved to ICU anticipating respiratory failure. That night I stopped breathing and was placed on a ventilator. The next morning I was transferred by ambulance to a larger Medical Center. I have very little memory of the next two weeks. I remained in ICU, on a ventilator and unconscious.
Plasmapheresis was a very new experimental treatment and they began the treatments the second day in ICU. I was told later that I also experienced severe heart issues. My case was so severe that the doctors told my parents that they were not sure that I would recover. As I slowly began to stabilize the doctors brought me out of the drug induced coma they had placed me in.
After a little more than two weeks in ICU they were able to take me off the ventilator. I was moved to a regular room and began the process of recovery. A week later I relapsed and almost ended up back in ICU. They continued the plasmapheresis for another week and I once again stabilized.
I was stable and starting on the road to recovery. At this point I was still completely unable to move my arms and legs, speech was very difficult, my mouth was still partially paralyzed and I could not blink my eyes. I spent the next two months in the hospital. When I was finally released I could barely sit up unassisted. I rehabilitated at home. Physical and occupational therapy came to the house each day. After three months I had learned how to walk, talk, feed myself etc. It was several more months before I could walk completely unassisted.
After about 12 months I was told I had probably regained all feeling, use, etc that I could expect to, there was nothing more they could do for me. I would have to learn how to live with the pain and remaining loss of feeling and use. I was released from doctors care. I continue to learn how to live with the daily physical reminders of GBS.
Until I found this site I had not met or spoken to another person with GBS. I am grateful to read your stories. After so much time I am no longer in isolation. I am not the only one. Thank you for sharing.