Living with Guillain-Barre Syndrome

I was getting ready to go on vacation to Denver when I woke with itching and tingling on the sole’s of my feet and the palm of my right hand. The more I scratched my feet welts began to appear on my legs so I called my doctor, got an appointment that afternoon. She looked at my legs and said I must have had a allergy to some food, gave me a 6 day steroid pack and I left for Denver the next morning.

Every day in Denver I woke to a rash on my arms, the last day of the steroid pack I woke with pain in my shoulders but thought it was because of all my sight seeing. Got to the airport to fly back to NJ when the pain in my arm became of intense I went to the courtesy desk and asked if the airport had a doctor on staff. They did not and I was asked if my condition was life threating and I said NO. Got on the plane and quietly cried for three hours. The next morning I told my husband there was definately something wrong with my arm and when I called my doctor only a nurse practitioner was on duty and I said I needed a real doctor and since my arm and shoulders were hurting my husband got me into his orthopedic doctor.

We drove fifteen minutes away and by the time we arrived I could not walk so my husband got a wheel chair, I was asked to stand up to get an x-ray of my shoulders and I could not stand. Luckily as soon as the doctor saw me he called the EMS to take me across the street to the ER. He would’nt let my husband drive me across the street. I told one doctor about the food allergy diagnosis and I could not breath. I was in a coma for six weeks on a ventilator, feeding tube, got pneumonia etc. I was then transported to Phila. to a facility that only treated patients on ventilator’s. Two weeks later I finally woke and realized I was paralized from the neck down. This hospital worked with me daily, PT/OT, breathing exercises until three months later I was transfered to a rehabilitation facility for a month.

I had to learn to walk, write, feed myself, etc. I was finally released and started 4 month of out patient PT/OT. Today I can walk, am getting the strength to pick up my grand children and am back to the gym. My legs are still numb from the knees down but I am learning to live with these problems. Forgot to say I developed a heart problem from this whole thing. Life is good. I am alive with the help of doctors, nurses, my family and friends. I truly believe that because I have been going to the gym for the last 25 years I was in pretty good condition for a 63 year old woman and that has helped in my recovery.