Living with Guillain-Barre Syndrome

At the time I got gbs I was 36 years old. I had, had the flu and was getting better. I woke up one morning and my hands were tingling (like they were asleep) I just figured it would go away and all day I had it and when my husband got home that night from work I told him they were still tingling. So I called the Dr. and I went in they said it was a pinch nerve. The next day it was getting worse and so we got a hold of a different Dr.( He had delievered our 3rd child)by this time I could barely walk, my children were having to help me walk.

My gbs started at my hands and descended down. We went in to see our Dr. and he knew what it was immediately, said sometimes it doesn’t go any futher and then it could go all the way. Went home and within a few days I could not breathe and my parents rushed me into the hospital. They had only one of the treatments at this place. My face started to draw on my left side and then I was sent to another hospital for the plasma treatment.I was put on a respirator and a feeding tube. I was completely locked in. Everything that was done to me to help, went the opposite way. I started blacking out when I was turned on my side. They found out I had to much pressure on my eyes and they wanted to do surgery, but was no guarantee that it would help. My husband requested they do a spinal tap and to release the fluids and after filling three vials they just let it go.My Dr. didn’t want to do this because it was not FDA approved.My husband said everything else that was suppose to work didn’t so lets try this. I was able to see again after that.

I was in ICU for 99 days. And when I was getting better they took me out of ICU and put me up on a different floor. I had to learn to do everything all over again. Still paralized. When I was to be released from the hospital I had a seizure and so they put me on depacote. I was released a few days later. I went home and not to a nursey home where the hospital wanted to send me, my husband insisted I go home to my children and grandson.I had phyiscal and occupational therapy everyday.I got out of the hospital in April 1997 in a wheel chair,by May I walked into our daughter’s graduation with a walker (we surprised her, she didn’t know I could use the walker)and then when our youngest daughter that was in 3rd grade had her ceremony I held on to my husband’s arm.But I had to learn how to eat again (hold utensils in my hand),play the piano again, sit up (that was the hardest thing to do cause I had no muscle usage at all yet).

It has been almost 12 years since and when I get tired my eyes will wink, my face will look tired. I still dont have all my feelings in my feet.When I smiled before GBS you could see my gums, now you just see my teeth no gums =). I thank God for all that he has done for me. It changed my life completely.I appreciate each and everyday and my husband who stayed by my side and my family. God wasn’t done with me yet.