please if you can help

    • Anonymous
      January 9, 2007 at 1:39 pm

      have had gbs for three yrs now not as bad as some no ventalator. but no movement from cheek on left side to arms and feet eight now i have such needle and pin in my feet and arms nertron does me no good shouldn’t it be healing a bit better by now i so afraid this is the way it is for ever:(

    • Anonymous
      January 9, 2007 at 2:16 pm

      Hello Pinky,
      I have another syndrome, CIDP, never had GBS and I can’t relate to it, but I just wanted to say WELCOME TO YOUR NEW FAMILY, WHERE WE FEEL WHAT YOU FEEL. NEVER NEVER NEVER NEVER give up hope! I believe 100% that we are not hopeless.

      Give people about three days to respond to your post, we’re in different time zones and we can have good days/bad days.

      I LOVE your name. I love puppies and dogs, we have alot of dog people here, my name CODYSTANLEY is my two dogs.

    • Anonymous
      January 9, 2007 at 2:27 pm

      Welcome, Pinky. I can’t offer advice, but I love my Goldens, neighter of which have a pink nose. Drop by for a chat, any time.

    • Anonymous
      January 9, 2007 at 3:09 pm

      Hi Pinky, welcome to the family. if you are in pain you need to talk with your neuro or pcp and get meds that will help control it. pain can be your enemy, it will keep you down when you really need to be getting exercise and moving around. are you getting enough rest? rest is good the more the better. what type of treatments, therapies and meds have you used in the past? more info is helpful. take care.

    • Anonymous
      January 9, 2007 at 9:45 pm

      hi pinky & welcome,

      if neurontin does not work you can try elavil, topamax, lamictal, trileptal, keppra, cymbalta, or lyrica . take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      January 9, 2007 at 10:02 pm


      Lets first get all the facts ……. When were did you detect your first symptoms? Also, have you had any tests, and if so what doctors have you seen? Your breathing doesnt seem to have been affected as you say, but have you had a stay in hospital, and what, if any treatment or meds have you had, or been on? Since the onset seems to have been a number of years back, has there been any improvement. And also, have you had any PT or Ot? I think these questions would help us in helping you a lot. Is it possible you can tell us what area you are from, as there are some people who may be able to contact you directly to help you out … and I know that you know how much that will help you out!

      Welcom to the forum!

    • Anonymous
      January 10, 2007 at 12:08 am

      woke up on my Bday 3 years ago could not move from neck down was not sick at all that day. yes test spinel tap came back gbs regular gp’s they know nothing and a real wacked out neuro going to go to a new dr at end of month the old neuro cause the first was busted for taking his own drugs yes was in regular hospital for almost two’s before neuro they didn’t know what was wrong with me a pt spotted the gbs and that now i got the neuro y was send to a rehab hospital for 8 weeks wonderful place had PT and OT there went in rehab in a wheelchair and 8 weeks later walked out with the help of a walker Been three years and my feeet are stll bad weak arms and fingers and a little numb in the face hoping to find med to help me but neurontin was useless to me just moved pain from toes to arch of feet I’m so tried still plus depressed just hoping to easy my pain a little tks

    • Anonymous
      January 10, 2007 at 9:27 am

      Hello Pinky,
      I think one of the first things you need to do is find a good neurologist who knows about GBS/CIDP. You should also find out if you might now have CIDP. I never had pain, but I know from listening to our family here that it’s real and if I did have pain I would want a doctor who would allow me to try different medications until I found what helps. Your post sounds like you do not have a good neurologist. I went through six neurologists!!!

      Please tell us where you live, just a country/state/BIG CITY is enough. We’ll try to help you find a doctor and there might be a forum member near you.

    • Anonymous
      January 10, 2007 at 2:22 pm

      hi again I live in a smalll town on the Maine coast called wiscasset Me. The neurologist I had is a total wacko not saying he not smart but just a wacko.He doesnot listen to a word i say hasn’t got time I have a new neuro
      appointment at the end of the month with hopefully a dr. who cares I’m a fighter at 57yrs old not ready to go down Just got alot of questions and finally found you guys doctor has no answers