Brand new and questioning

    • Anonymous
      October 5, 2006 at 4:03 pm

      Greetings all,
      It has been less than two years since I was diagnosed. I have returned to all my normal activities, and haven’t seen my neuroloigist for over a year. I just found this forum and am excited about communicating with you and relying on your experiences. Do any of you know about relapses? There are times when I experience some symptoms, but I’m never sure if they are GBS related or just getting old related. Does it ever really go away or just lurk in my system? What if I get another upper respiratory infection? Am I being too whiny and paranoid?

      Thanks, and good to meet you all.

      Vmac from Vancouver WA

    • Anonymous
      October 5, 2006 at 4:50 pm

      Dear Vmac:

      Welcome to our little family. I am glad you found us. You are not being whiny at all. You are only asking intelligent questions that have important implications to your health, security, and peace of mind.

      As far as relapses, most occur within six weeks of onset, which suggests that the initial onset never really went away in the first place. After the initial six weeks, your chances of a relapse are about one in two hundred. Those are pretty long odds, but still over 1000 times higher than the odds of getting it in the first place.

      The return of symptoms, which are also called residuals, is more often a result of not getting enough rest, over exerting, being dehydrated, a lack of electrolytes, or being hungry. In short, anything which strains your system can cause residuals to flare up.

      Remember that your demyelinated nerves are extremely inefficient in terms of energy usage. The loss of energy causes fatigue. If you aren’t getting 9 to 10 and a half hours of sleep a night or if you don’t practice good energy management, you are going to starve your nerves of energy, and they rebel by sticking it to you. Listen to your body, it will let you know when you went too far.


    • Anonymous
      October 5, 2006 at 5:14 pm

      Thanks Lee,
      You’re the best! That was all information I didn’t have.

    • Anonymous
      October 5, 2006 at 5:46 pm

      Hi Vmac. I really don’t have anything to add to what Lee said but I wanted to welcome you to the site. You will find Lots of support and info here. Vicki

    • Anonymous
      October 5, 2006 at 8:54 pm

      Welcome vmac,

      Lee pretty much summed it up. I hope you enjoy the forums as much as many of us do, and remember, no question is too stupid. 🙂

    • Anonymous
      October 5, 2006 at 9:03 pm

      Gald to have you aboard Vmac. Folks here have given me great advice and a sounding board, feel to ask away!

    • Anonymous
      October 5, 2006 at 9:50 pm


      Glad you found our forums. Most of us have a real fear of a relapse after having GBS. It is such a shocking disease that it’s no wonder we are afraid of getting it again.

      Best wishes, Suzanne

    • October 5, 2006 at 10:30 pm

      A nurse friend took me aside at a wake we at, to talk…she had GBS 10 or 12 years ago and is scared of going thru it again. I told her about the forum and the low insidence of relapse…which is reinforced here constantly. Her look of relief was just amazing.
      When I went in the hospital the forum was were my daughters went for info…and the knowledge helped my wife and I get through it.

    • Anonymous
      October 8, 2006 at 9:34 am

      This is an amazing place. I’m just so thankful for the folks who are so helpful and positive. I’ll try to hold up my end of it.

    • Anonymous
      October 8, 2006 at 10:26 pm

      vmac. so glad you started this thread. i’ve been wondering that myself. i am 5 years post gbs and got it from an upper respiratory infection. i’m terrified to think i would have to go through this again. i sorta over did it last thursday and thought i might be going through a bit of a relapse. now i know to just relax and take it easy. i rested all weekend and am ready for the gym tomorrow to keep my stregnth up. welcome vmac. feel free to chat any time.

    • Anonymous
      October 8, 2006 at 10:53 pm

      relapsing queen here…:) they are a possibility but unless you run yourself too hard and don’t rest when your body tells you to and don’t take care of your body like you should or just plain have the chronic gbs relapsing/remitting type, like i have, then you should not be fearful to live your life to the fullest. i try to even with this r/r type! just think positive and listen to your body and you can have a wonderful life!!!:) if it happens, it happens, there is really not a whole lot you can do to stop it from happening if it wants to. enjoy life each day and don’t sweat the little things! Take care.:)

    • Anonymous
      October 8, 2006 at 11:53 pm

      VMAC, welcome aboard. I am new myself. This is a great group of people who are more than willing to help.
      Best Wishes,

    • Anonymous
      October 9, 2006 at 2:25 pm

      Hi Deb,
      I’ve had a couple of really weird immune system breakdowns since GBS. By and large, though. I’m great. I feel so thankful for the recovery I’ve had. Certainly because of all those folks that were praying for me. Thank you God!!