Living with Guillain-Barre Syndrome

My story began almost 30 years ago, during my first pregnancy, and after her birth. At about 8 1/2 months pregnant, I developed a bad cold and was given antibiotics by my O/B. The cold went away after a few days, but I started falling down, and someone had to pick me up and lock my knees in order for me to stand. I went back to my O/B immediately, and was told by him that I was carrying my child “low” causing undo stress on my leg nerves. Sounded reasonable.

A week later I gave birth with no problems, but I began to get worse. First in my legs, then when my daughter was 4 days old, my arms went. I was panicked. My mom was at the time working for a “bone specialist”, so she had me go to see him immediately. He did a series of tests, and at the end, he told me that he wasn’t sure, but suspected I had Lou Gerig’s disease, or Amyotrophiclateralscelorosis (sp?) [Amyotrophic Lateral Sclerosis (ALS)]. He then said he was sending me to a special clinic in Santa Barbara Ca.

I went the following day, and met my Neurologist. He was a wonderful man and felt for me as I was a new mom forced to be away from her newborn. He ran the series of tests, and couldn’t quite put his finger on what I had, so sent me home with some kind of medicine. The next day, my mom and dad came to help me take care of my baby, and my dad was panicked because every muscle in my body was contracting, and I looked real funny, at least to me I did.

He called the Neurologist and the Dr. told him he wanted me in Cottage Hospital the following day. As an inpatient, I was treated like royality by all the staff, and given 2 lumbar punctures on 2 different days, and a number of nerve tests also. At the end of my 4th day, the Dr. came to my room and told me that he believed I had Guillain Barre Syndrome My response was “what?” He explained to me what it was, and also told me that his confusion came from the fact I had no respiratory problems. He told me I was the 7th reported case in the U.S., and I was the first case not requiring an iron lung. My response to him was “and do I get paid for this?”

He sent me home with Prednisone, a deadly dose that I had to take very carefully. I had one followup with him a month afterward, and he was pleased that I was improving. My “gate” wasn’t so wobbly, my face wasn’t pulling down, my hands weren’t turning in any longer, and I still had my sense of humor. Unfortunately that was the last time I saw him, as he passed away from a heart attack I continued with my regular Dr. and after a year of extreme weakness and numbness, I started getting feeling back, and wasn’t so afraid of walking, for fear I would fall down while holding my baby.

I read the report my Neurologist sent to my regular Dr., and it stated that he believed I was in remission from the disease. Well, thank God, my remission has lasted almost 30 years now, and I pray it will continue. This is the scariest thing I ever went thru, but there is light at the end of the tunnel, that a full and normal life can be lived.