new to site dx gbs

    • November 2, 2010 at 9:22 pm

      Glad I found this site, it has been a great info resource. This has all been new to us and it helped to read some of the posts. Here is a quick summary of my story.

      Treated for Brochitis Sept 12
      Pneumonia dx’d Sept 18th
      prescribed levaquin, and steroids

      Noticed diffculty walking around 9/20, which continued to deteriorate as the days went by. Numbness in fingers and toes appeared 9/25. After some reasearch i thouht i was having a side effect to the levaquin and stopped taking it. Went back to my pc, and got a general antibiotic. By 10/1 the pneumonia was clear. During the 1st week of Oct my Primary refered me to a nuero since i was begining to have coordination,weakness in my hands. Nuero did an evaluation sent me for an MRI and follow-up appt (in 2weeks). Also my PC sent me for a liver ultrasound since 2 of my liver enzymes were starting to go well beyond normal levels. Both MRI, and liver ultrasound came back normal.

      Still mobile that friday Oct 8 we made a trip to the Vanderbilt ER with all our test results in hand. After a lumbar puncture indicated elevated protien levels, the nuero team dx’d GBS that evening. From there….

      -Transferred to ICU
      -4 days IVIG
      -2 days in step down room
      -1 week in patient rehab
      -sent home Oct 19
      – 3 days of op/pt per week.

      Although, I am very weak in the arms, and legs i am fortunate since it did not seem to progress above my waist. still walking with a walker outside. About 400 ft is my max. typing is absolutely brutal.

      I’ve had a lot of support from family and my wonderful wife. Helps remind me to be positive and do what you can for myself.

      I am ready to start seeing improvements, and getting things back to “normal”

      BTW does anyone have info on accupuncture and this condition?


      I was dx with GBS on Oct 8.

    • Anonymous
      November 2, 2010 at 9:59 pm

      Welcome Kevin,
      You did a good thing for youself going to Vanderbilt getting dx’d and treatments started.
      You have already made great progress.
      Nice to know you have great support.

      Wishing you continued improvements.

    • Anonymous
      November 3, 2010 at 1:46 am

      Welcome to the GBS family! I had accupuncture for several months and I always felt better. It can release alot of toxins so the first day after you may feel “flu-ish”. I would recomend massage therapy especially if you have difficulty with your circulatory system. I did, and my heart was involved. I was much “stronger” then. Currently we have only my disability funds to live on and I can’t give up my pain meds! I hope that Santa Clause will see that I’ve been a good girl and will put a gift certificate in my stocking – ha!;)

    • Anonymous
      November 3, 2010 at 7:37 am

      Glad you found us Kevin, our cases sound simular except I got mine after surgery. I was out of the hospital last Febuary and and was using a walker, progressed to a cane in about 4 weeks, started work part time after 8 weeks, lost the cane after 6 months and am working full time since August. I still have some numbness in hands and feet but overall very happy with my progress.
      I understand what you mean about typing, not knowing how many keys you are hitting at the same time makes it difficult.
      If you would like to talk, send a private message and I will gladly spend some time with you on the phone. Support is here if you need it.
      Good luck and good healing

    • November 3, 2010 at 9:36 am

      Hi Kevin

      Good luck with recovery, sounds like you’ll be fine. Be patient.

      I got little from acupuncture but didn’t pay for it because i have coverage. No loss, felt weird doing it, no gbs improvement but it helped with other muscle pains.

      Check out this thread:


      Stay cool

    • Anonymous
      November 3, 2010 at 4:43 pm

      I don’t have the dexterity in my hands to type plus i need to see what I am doing.
      Since you all mentioned about brutal typing , try hoolding on a pencil & hit keys with pencil. It helps me alot, but it sounds like your hands are better than mine.
      Give the pencil a try you’ll be surprised, my mom gave me this idea & it works for me. Good luck

    • Anonymous
      November 6, 2010 at 12:56 pm

      Hello & welcome to your GBS/CIDP family. If accupuncture, & message helps & makes you feel better, go for it.
      Love, smitty