• Anonymous
      September 1, 2008 at 7:26 pm

      I got GBS b/c of a stomach flu. This past weekend, I had a stomach flu for the 1st time since i got GBS. Scared to death i am going to get gbs again.
      Can I???? Will i be OK??!!

    • September 1, 2008 at 8:09 pm

      I have had the flu after GBS..colds too and surgery. I was scared too. It knocks your body for a loop and you may feel sick longer than you used to, but things should be okay. There is a 3% chance of getting GBS again. Which my dr turned around and told me to look at it as 97% that you wont get it again. Just keep an eye on things, rest more, take care of yourself and let us know how you are doing.

    • Anonymous
      September 1, 2008 at 8:13 pm

      I know exactly how you feel. After I had GBS I got scared anytime I got sick or felt tingling in my feet. You can get GBS more than once, but it is extremely rare. I have found over the years that I may get some tingling in feet or hands, fatigue and muscle pain, but ( knock on wood ) I didn’t get the acute GBS like I had.

      It is normal to be scared, believe me. All of us have felt the same way.


    • Anonymous
      September 1, 2008 at 8:51 pm


      As others have said, we all get scared. I am like boomerbabe and I still get scared when my residuals flare up. I didn’t have too many early after GBS but have lots now and it does frighten me some days. Just know we are all in this together. Rest lots, drink plenty of fluids and don’t push yourself too quickly. Take an extra day or two to recuperate.

      Take care.

    • Anonymous
      September 1, 2008 at 9:14 pm

      Thank you for the reassurance!! I had a bit of a mental breakdown tonight thinking of having to go through all that again and being away from my kids for so long. 🙁

    • Anonymous
      September 2, 2008 at 7:36 pm

      Me having Lupus and CIDP! I get scared period when I get sick having that fear of getting another attack on my nervous system. So I know how you feel! I think we all get scared when we get sick! Our immune systems are so much different than the average person.
      But hope you stay well and do okay! Hugs

    • Anonymous
      September 3, 2008 at 9:43 am

      I get that feeling too. It is hard but try not to worry too much … in the end we don’t have much control.

      I try and worry about things I can control more … like getting enough sleep and rest and loving my family.

      Hugs and hope you feel better soon.

    • Anonymous
      September 9, 2008 at 9:40 pm

      My neurologist told me more than once that with true GBS (not cronic or other variants) you really are no more likely to get it twice than you were getting it the first time. Given how rare it is, few are THAT unlucky.


    • Anonymous
      September 10, 2008 at 5:01 am

      I wished Lupus could be this way of just getting one attack. Get a bug with Lupus and anything can happen with me. That disease can get nasty too. I stay away from people around flu season. Become a hermit! 😀 But it is a fear you never get over with. I guess with any chronic illness you get fears and scared of getting the massive attack again.
      Funny how I can deal with mild attacks of lupus with no problems. But when a big bad attack strike, I get scared to death. And that is so hard dealing with. Hope you are doing okay and not having any problems so far! Scary stuff! Really scary! Hugs

    • Anonymous
      September 22, 2008 at 2:15 pm


      I have had a relapse…..I only mention this to mention that it is possible. I also have had many many symptoms between the 14 years that I went after my first bout that turned out to be fine.

      You can’t live in fear, but you have to be vigilent and always get lots of rest.

      Take care and be safe.