Living with Guillain-Barre Syndrome

I was 31 years old, getting divorced and by all intents and purposes, I was very happy for myself and my two children. It was August and the kids were staying with their dad until the start of school. Working within the school system, I had the summer off. I awakened on August 4, and was surprised that my hands felt like they were sleeping. I shook and shook them, and got to the point of a pins and needles feeling. My room mate was going on vacation with her boyfriend, and leaving that morning. We had coffee together, and I complained about my hands.

Within two hours, my arms felt very heavy. I tried to tell myself it was lack of sleep, and continued on. By that evening, the heavyness was in the trunk of my body, and my legs ached. I also was developing quite a headache. I fell asleep and upon awakening, I realized that the heavyness had increased and I now had a metallic taste in my mouth. As I arose to go brush my teeth, I was staggering like a saturday night drunk. Swallowing seemed a little more difficult than usual. I could not remove the metallic tasts in my mouth no matter what I tried. I was in quite a bit of pain that second night, and fell asleep on the couch, sitting up. When I awoke, I tried to stand and fell on my face. Walking was no longer an option.

At this point there was extreme fear, knowing that this was not going to go away. I then crawled on my hands and knees to my door, with my car keys in my teeth. I lived on the second floor and went down the stairs on my butt, got to the outside door and continued the crawl to my car. After repeated attempts, I made it into the car, started it and drove in second gear because I didn’t have the strength to shift any further. My soon to be ex only lived 4 miles from me, so I got to his house and literally fell out of my car onto his driveway.

He carried me into the house and then called an ambulance. I was taken to Ann Arbor, U of M Hospital. I could only whisper as my respirations were so low, you had to put your ear to my mouth to hear me. Those doctors told me I was mentally ill, and needed to be in their psych unit. I felt they were just a little more screwed up than they thought I was. I begged my husband to remove me from their ER as I felt I would surely die there. He complied and took me out of there and to downtown Detroit to Henry Ford Hospital. We did not tell them at the beginning what took place in Ann Arbor. I was too afraid of what they might suppose. After I was examined by the ER doctor, Dr. Enriquez, he said that I might have MS Spinal Meningitis, or a rare virus called Gullian-Barre’. They would do a spinal tap to determine. Well, after about an hour, 12 doctors came to me to tell me that it was Gullain-Barre. They said I would be an extreme case, and to expect to stay with them for a while. I was in the ICU for 5 months and then went to rehab. But that whole experience is another story.