Long Time Since been here

    • October 30, 2006 at 9:29 am

      It’s been a long time since I’ve been here. I have some questions and my Mom has some worries about things that have been going on with me.

      I was diagnosed in July of 2002 with MF and GBS and rcovered to the point of being able to work up to 3 days a week. I started this past year in April to take on more, by selling Pampered Chef and lately this month, have been having numbness in my tongue which doesn’t go away, tingling off and on in my extremities and FATIGUE FATIGUE FATIGUE.

      My face was paralized initially with the MF GBS and never recovered fully after. My smile is less, my muscles around my eyes and mouth do not seem to work like they did before the MF GBS.

      I also am so tired all the time lately things take so much energy to get things done.

      Does anyone know if this could be just residuals or if I should be concerned about a possible relapse?

      Thanks for your input and help.


    • Anonymous
      October 30, 2006 at 11:03 am

      It sounds to me more like a case of overdoing it, than any kind of relapse. I am 4 1/2 years post getting CIDP & fatigue continues to be my worst enemy. I can only do a few things in one day or I will suffer dearly. Going back to work is just a pipe dream for me, as it will never happen. I would just try to cut back, get more rest & then see what happens.

    • October 30, 2006 at 2:50 pm

      Thanks Pam. I did make an appointment with my neurologist and FP doc.
      I guess what concerns me is the fact that in the past if I over did it, rest would almost always help. This time it just plain is not going away. My tongue feels like I have those square batteries on it. My legs arms feet and hands feel like I have pins and needles in them. It’s kind of scaring me.

    • Anonymous
      October 30, 2006 at 9:45 pm


      you said it yourself. you’ve taken on more & feel its effects. you are over doing it. scale back & you will feel beter. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • October 31, 2006 at 10:56 am


      you said it yourself. you’ve taken on more & feel its effects. you are over doing it. scale back & you will feel beter. take care. be well.

      gene gbs 8-99
      in numbers there is strength[/QUOTE]

      Thanks Gene. I am just so frustrated. I try and try and the former Neuro I saw (which I wouldn’t give you 2 cents for) said that I am 98% recovered. He doesn’t see that my face is permanently not the same as before, or the fatigue with the symptoms I have if I do to much, because clearly I can’t do like I did before, because before, I worked a full time job and then always something on the side for extra spending money, had a spotless house, everything always had its place, was on the go constsantly etc…. Now I have made it to part time, my house is a mess due to the less energy, I do try though to keep up on it, I can’t do like I did before, and if I try to do any more, these symptoms come back to haunt me.

      I am sorry to complain. But I got to get it out and I thank you for listening.


    • Anonymous
      November 2, 2006 at 1:23 pm

      I understand the face issue. Just the right side of my face was paralyzed including my eyelid. I had that plastic bubble thing and the goop in the eye. As I started to get better I could feel the movement in the right side but I can still tell when I talk that I sometimes will start to slur a bit and the right side doesnt work as well as the left expecially when I get tired. When I shower (and I shower at night when I’m tired) I have to make a special effort to think about closing my right eye tight otherwise I’ll get soap in it. Nobody else can see this normally but I can feel it many days expecially at the end of a long day or if I’m just tired or fatigued that day.