New to this but an old GBS

    • Anonymous
      September 12, 2006 at 10:04 am

      Wow! I didn’t know that there were so many of you out there. I first had GBS (Miller Fisher variant too) back in 1978 and then again in 1982. There wasn’t much info then. I had gone to the Outer Banks on vacation at the end of the school year. (I’m a teacher) and I had had a sore throat. My eyes were really bothering me. That was my first symptom. By the second day of vacation I was seeing double and not walking too well. I went to the local clinic and the doctor was not sure what was wrong…maybe food poisoning? The next day I went back to the doctor because my sympoms were worsening. He sent me to the University of North Carolina Hospital in Chapel Hill, N.C. By the time I reached there I could not walk. They were unsure of what to do but since I was having breathing problems they put me in ICU which I made my home for the next two weeks. They told me they were not sure of what was wrong but thought they could keep me alive. They did several tests including two spinal taps and finally concluded that it was GBS Miller Fisher variant. I was completely paralyzed, my eyes would not move or close…they were completely separate from each other. My system was rapidly closing down.
      Soon though the decline stopped and I eventually progressed to a room on the neurological floor even though I was still paralyzed. I was a rare case for them and had many medical visitors. Gradually movement came back but slow.
      Eventually I left the hospital headed back to Tennessee. I recovered enough to walk with a cane but what had started with my eyes ended there. It took another 6 months for my eyes to work together again. The left side of my face remained paralyzed for that 6 months also. I did go back to work with an eye patch and a cane. The major permanent damage was the ankle and knee reflex which are gone. Four years later I got GBS again but a much milder case. It came 5 months after the birth of my second child. I didn’t have to go into the hospital but my muscles were not working well. I couldn’t even hold my new baby.
      To date other than restless legs and severe sleep apnea I had had no problems.
      I wish this had been around then because it was very hard for my family and me to find any information. Luckily I ended up at a hospital noted for its neurology department.
      Thanks for reading.

    • Anonymous
      September 12, 2006 at 2:25 pm

      Welcome Babe,

      How are you doing now?

    • Anonymous
      September 12, 2006 at 6:52 pm

      Welcome to our family Babe, glad you found us.


    • Anonymous
      September 12, 2006 at 7:17 pm

      Welcome Babe. Hope you continue to come back here. We try to help each other with our expericence. You’ve obviously been through a lot.

    • Anonymous
      September 12, 2006 at 8:36 pm

      Mighty Hi and weldome Babe….drop by and take your coat off!

    • Anonymous
      September 13, 2006 at 8:46 am

      Welcome to our family. I cant believe the number of people whose cases started when they were on vacation. Some vacation, eh? 🙁 How are you now??


    • Anonymous
      September 13, 2006 at 2:17 pm


      That was an interesting observation. I’d not thought of it until you said it, but you are right. Might make a good poll question.

    • Anonymous
      September 13, 2006 at 2:46 pm

      Thanks so much for the warm welcome. This forum has answered some of the questions I have had and given me alot to think about.