New to board/7 year GBS history with need for help

    • Anonymous
      October 9, 2006 at 7:37 pm


      I am here hoping that somebody might be able to help me. I suffered from severe GBS in 1999 which quickly led to total paralysis. ICU for a week with a feeding tube inserted through stomach but didn’t end up needing a ventilator. I seemed to have recovered completely after only 8 months with only minor issues with my feet.

      I was a very healthy person prior to this disease but since the disease I have been having miscellanious things go wrong with me. It started with my gall bladder and appendix failing and needing to be removed. The surgeon found 5 adhesions that she cut while she was in there. This led to a severe pain in my abdomen that I tried to work through but as I continued working the pain became so severe that I was bed ridden for the better part of two years. The doctors had no idea as to what was causing the pain. The surgeon even insinuated that it was in my head. There is one thing that is for certain and it was a very real very extreme pain that did not want to let go. After being idle for a year and a half the pain finally started to dissipate but ever so slowly. I am nearly certain it was the adhesions and they didn’t heal correctly but the doctors could only guess that was the cause.

      I thought I was all better and I was until I was holding a bowl of food tightly with my thumb and fingers and the thumb became sprained and the sprain became severe. The thumb took 8 months to heal to 90% where it has remained for the past year. This by itself wasn’t that big of a deal but then I was teaching my nephew how to ride his bike and while I was sprinting I sprained my left achilles tendon. This quickly became very severe and needed casting which did little to help it. I ended up spraining my right achilles tendon while I was hopping around on it due to the left one not working. I was in orthopedic boots for 9 months and a wheel chair for close to 4 months. I have been on crutches for almost a year now. The doctors cannot figure out why the inflammation took so long to leave and why the pain is still very serious and my ability to walk is extremely limited.

      Each doctor says that they don’t think it is related to the GBS I had but it doesn’t make sense that I was healthy before having it and I injure so easily now and my body does not like to heal.

      Does anybody have anything similar that has happened to them? I have become very depressed that I cannot seem to live normal and take care of my family. On top of everything, the disability insurance company is ignoring my three doctors who say that I am disabled right now and they all want me to go to Mayo to see if it can be figured out. They have told me they will not pay my claim. I have rambled on but I am just hoping that I am not alone I guess.


    • Anonymous
      October 9, 2006 at 10:06 pm

      hi & welcome,

      your probs are a little unusual for gbs, but i would not rule them out as gbs intensified. i think the mayo is a good idea. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      October 10, 2006 at 9:00 am

      hi northportmiller, welcome to the family. have you been checked out by a physiologist? in the last 3 years i have gone through similar problems, i went to a new ortho 2 weeks ago and he sent me to a physio dr whom i saw last week and now i go back to my ortho this week. my ortho knows about gbs, residuals and of course i went to see him because my knees were blown. i have been on and off crutches for a number of months now because of my knees primarily. ortho says my knees looked ok to him from the xrays he took in his office. he says what is going on is my muscles, ligaments and tendons are too weak to be able to keep me up and move my joints like they are intended on doing. it makes sense because it would start in one place for instance my right knee. while compensating for my right knee my left knee bears 1 1/2 times the weight and movement then the right, which leads to the left getting weaker and more painful day by day until it feels as bad as the right. every muscle, ligament and tendon have their own jobs to do and when one goes out, or in my case atrphies the other side can’t keep up because the nerves aren’t supplying the correct amount of messages to the muscles and they get overworked and that leads to more break downs. my physio says i need long aquatic therapy just to keep my muscles from atrophying anymore, not to build the atrophied muscles up-that probably won’t happen with my chronic gbs relapsing/remitting type. he also was not thrilled that my ortho thought braces would help regain muscles, because they would only drain my energy more and the only thing braces might help with is to help me stand without falling as much. so my physio recommended some high tech supports that will need to be built around my legs and will be hinged so i could walk easier and get up and down without over exerting myself. right now i am using my cane again because i can’t control my crutches easily due to muscle atrophy in my right forearm.
      once one muscle group weakens to the point of making the otherside over exert itself it can cause a snowball effect in your body-is the short version of what i’m trying to say. don’t just treat one group of muscles on one side treat both sides at the same time, otherwise it will just keep going on and on. what kind of pt or other types of therapies have you used or are using?
      the only reason i can’t do land pt is it can do more damage then what is already done-i’ve been doing land pt since aug 05 for gbs and since i have remitting/relapsing type of gbs i just have to keep starting over from scratch after each paralysis event. with not enough time to get back to normal in between events it is really hard to gain a foot hold on rehabing.
      don’t give up, keep a positive attitude-i know you are sick of hearing that, but it is the only way to look at things after going through gbs and residuals. make sure you rest your body mind and muscles everyday. don’t over do anything, including running, holding things, remember the nerves aren’t necessarily back to normal even if you think or can do a specific task from one day to the next. the muscles can get fatigued easily at all times and doing all things. i have learned that the hard way!:rolleyes: take care and know you are not just imagining things, you might be in that 1 or 2% of gbs people who are unique-like i’m always told!!:) take care.