GBS head, hands, and feet

    • Anonymous
      March 26, 2007 at 10:04 pm

      While travelling in England last summer, I became ill and had to be taken to a nearby hospital in Dorchester, Dorset (England). I was diagnosed with GBS within a matter of days–a severe case unfortunately–and I have been recovering ever since.
      I am recovering the ability to walk, albeit slowly, although the pain in the the toes and lack of flexion of the ankles still cause difficulties. Has anyone any suggestions for help with these matters?

      The fingers of my hands skewer at about 30 degree angle out of correct alignment and away from the body. Any suggestions for help on this problem?

      I also am concerned because my GBS does not always conform to the classic symptoms. During the early stages of GBS I suffered from loss of mental acuity–confusion about where I was, problems with short term memory, fantasy, lack of coherency, etc. While most of these have cleared up with time, I still find that I have some problems with short-term memory. Does someone have insight about these problems?

      Fran

    • Anonymous
      March 27, 2007 at 12:34 am

      In regards to your short term memory loss, read the thread, “Update and brain fog” on the GBS Forum. Classic symptom for GBS. I have also read a lot of posts in the past about people hallucinating when they were at their worst, even not remembering most of it. I think you sound pretty standard for GBS…

    • Anonymous
      March 27, 2007 at 6:51 am

      hi fran & welcome,

      neurontin for pain. for both hands & feet, 2 suggestions. try to make them do the correct thing on their own with your willpower. using whatever means necessary, force them to full extension, within reason, & move them as they should move. in other words retrain then w internal & external forces. keep at this. never give up. never give in. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      March 27, 2007 at 7:02 pm

      Hi Fran,

      Welcome to the forums.

      Are you having physical and occupational therapy for range of motion? One needs to have some kind of therapy. Several people here had the same problems with hallucinations and memory loss, just part of GBS. Are you taking any medications, because some will cause short term memory loss?

      Take care.

    • Anonymous
      March 29, 2007 at 10:10 am

      Thanks, folks, for your responses. Over the past week my balance and strength for walking have improved, so I’m hopeful about those problems.

      The hands remain my present concern, specifically the skewing of fingers at an angle away from the body and (to a lesser extent) the skewing at the wrist. I’ve been to a hand specialist (no knowledge about GBS) who said that straightening them would be more difficult than increasing flexion, since it involved straightening muscles and tendons that had gotten out of line and that cutting tendons to increase flexion would make grasping objects impossible. Big bucks for a 5 minute consultation. Does anyone have any advice/ knowledge that would be helpful about this problem?

      Fran

    • Anonymous
      March 29, 2007 at 11:15 am

      Hi Fran

      First about ther hand specialist. Others have posted that they have had little success with surgery. The other thing about the hands. Stretch the muscles back into allignment and keep working on flexation. Keep those muscles stretched or the cramping can be really painfull. And as Gene says, “don’t give up”

      Jim

    • Anonymous
      April 4, 2007 at 5:19 pm

      Fran,

      I would not even consider any type of hand surgery until you are at least 4 to 5 years post GBS. I had surgery at 2 years and it was a BIG mistake. Just keep working those hands as much as possible and give your body a chance to heal them.

      GB

    • Anonymous
      April 9, 2007 at 9:11 am

      I had this problem while I was in hospital and as well as physio on my hands and fingers, my PT also used splints. Have you explored this option?

    • Helga
      April 9, 2007 at 2:31 pm

      my hands was all in mess and I have been working with speacial clay to get them to get strength and to stretch theim in right possision, and with lot of exersises and stretch I have goten theim almost right my hubby was realy afraid that I would have to have more help, but with this you can get the mucscle to respond to your doing and your head tell your hand what to do and in the end they start work as you want theim to do.
      hope this help, this is just work and more work to healthy again after GBS
      xoxoxoxxoxxo
      Helga