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    • Anonymous
      December 19, 2007 at 7:36 pm

      Hello to everyone…I was diagnosed with GBS on Nov. 19th. I only spent a week in the clink(Hospital). From what I have been told my symptoms were a little different. My symptoms started in my neck and worked their way down to my feet. I lost use of my hands and my kids ended up having to feed me and dress me. At first the pain was only that of a sorness, stiffness, then it went to when I would use a muscle it would cramp. Lots of fun. I started to have problems breathing on day six. I actually woke up from sleeping because I was not breathing. Talk about a strange way to wake up. My biggest complaint has been the lack of knowledge about the side effects of GBS. ie, why I’m tired all the freaking time. I’m tired of asking the doctors if this is normal and they give the typically answer of “Everyone is different”. That translates to “I have no idea, and please stop asking me questions” I feel as if I’m not in my body, kind of like an out of the body thing. I do PT 3x a week, but I feel nothing. I don’t feel the pump from all the blood running through my body after a workout. I sweat, get out of breath, but thats it. So in the end I am happy that I am home, but I’m very frustrated.


    • Anonymous
      December 19, 2007 at 10:13 pm

      Welcome to our family. Sorry you are going through one of these frightful syndromes.
      I have cidp. So, i do not know if what you are experiencing from gbs is normal or not.
      i do know there are some incredibly knowledgeable people on this forum that will be able to help you.
      We are here for you to laugh, cry, vent, learn.

    • Anonymous
      December 19, 2007 at 10:31 pm

      Hi Sean and welcome,

      Unfortunately (boy, thats not a nice word to start a reply with) fatigue is [I]the[/I] most common residual with GBS, and it [I]may[/I] very well be something that wil[I]l [/I]plague you for most of your life 🙁 – sorry to have to say that.

      Very important to remember that when doing PT you must not push yourself beyond what your body tells you you can do. In the case of GBS, the saying ……. ‘no pain, no gain’ definitely does not apply – you have probably read that here already though. At this point in time, rest is still extrememly important for your body, specially since you are so early into your recovery phase. Pushing yourself because you think thats the best thing you can do will unfortunately only set you back.

      You are right about the lack of knowlege out there, unfortunately this is so common, and in many cases the patient suffers even more because of that. Great kids of yours by the way! Keep us posted and I hope you find this site helpful in many ways 🙂

    • Anonymous
      December 20, 2007 at 4:59 am

      hi jones & welcome,

      rest, rest, & more rest lying down is the fastest road to recovery no matter how long it takes. gbs stands for Get Better Slowly.

      gene, away from home

    • Anonymous
      December 20, 2007 at 2:52 pm

      Hi Sean and welcome: Doctors have not yet caught up with established facts about GBS like residuals which, unfortunately, are very common. You can have fatigue, pain, and what feel like relapses. They are right, though, that noone can predict for you the course of recovery. Some ofus recovery a lot some not so much and some have few residuals while many have more than one. The best advice I can give you is to educate yourself about this disease-read on this forum past posts and perhaps get Dr. Perry’s book. The more you know the easier it is to deal with doctors-you can help educate them. It is your body and you will know what you are feeling-that is most important. And, as others have said, I found the greatest help is rest-lying down before I get exhausted or the pain begins. Good luck. Jeff

    • Anonymous
      December 23, 2007 at 9:33 am

      Welcome, Sean! I’m new here, and new to GBS with lots of questions, too. I’m starting to wonder about relapses and residuals too…what’s life going to be like now. Seems the common denominator is we experience nearly all the same symptoms, just different levels of intensity. Doctors aren’t sure about my onset since I had 1 episode of tingling and numbness and that “out of body” feeling on 12-6 (thought I might be having a stroke). It started at my feet and traveled up to my head, arms and out thru my fingers. Felt as if I was sinking down into my chair. It went away w/in seconds, the only leftover feeling was fatigue. I had a severe resp. infection at the time. Put on oral prednisone the next day, for next 4 days. Got real clumsy and tired on the 11th (chalked it up to the infection) but had the numb hands and feet and overwhelming weakness the next morning, 12-12. PCP sent me to Houston by ambulance after hearing the symptoms over the phone, neuro in H-town agreed it was GBS but can’t say if episode on the 6th was onset or if it was the 12th. BTW, has anyone had GBS following a flu shot? I had a flu shot the week of T’s-giving, got the resp. inf. 10 days later, then GBS. Any vaccinations we should avoid in future? Thanks for answering my many questions, I’ll try not to ask too many at once.

      Best wishes to all and Merry Christmas!


    • Anonymous
      December 23, 2007 at 9:03 pm

      Thank you for reading my post. It’s very hard sometimes to explain what you are going through to people who don’t have GBS, which makes this place great because you all know what it is like. Everyone means well, but it’s tough to explain what is going on when sometimes we don’t even know what is going on in our own body. I am very lucky to have gone to the doctor when I did, and even luckier still that my doctor knew it was GBS. So please take it easy on those who want to help us, because like us, they too are lost in our body.