What do I expect next….

    • Anonymous
      October 9, 2007 at 1:24 pm

      I was diagnosed with CIDP in March of this year.
      I have a great neurogolist who started me on IVIG and I had a wonderful reponse to it. Other than the few days after my infusion life was normal. I had an infusion about 10 days ago but now I have mucle aches and fatigue. This morning my right leg was too weak to support me and I fell. Emtionally right now I am a mess because I didn’t expect this. I was under the impression that once the initial symptons (tingling, muscle weakness…) stopped then the IVIG was more maintencne to prevent any futher progression of the disease. I had just come to terms with the idea of a chronic illness and was OK as long as I could expcet a normal life. This morning was by no means normal and I’m loooking for a little assurance that it gets better. If not then a dose of reality so I won’t set my expections so high. Thanks.

    • Anonymous
      October 9, 2007 at 1:49 pm

      I am sorry you are not feeling well, the emotional part is a key factor in any chronich illness. I can sincerely tell you that it does get better but not in a predictable way, sometimes you will experience problems, some others you won’t. IVIG is great but it has different effects depending on factors sometimes not even doctors can understand. You had a good response to IVIG, that is a great thing not everybody experiences. Some people take many months to star feeling the benefits of IVIG or never have them, you felt them right away, that gives you a good prognosis. I recommend you always expect the best scenario, reality is not only negative things, reality is both negative and positive, being realistic does not mean being pesimistic. And something i have learned about other people here and about my own experience is that worrying about the future won’t help in any way, try to enjoy your present, is the only thing you have for sure!.

    • Anonymous
      October 9, 2007 at 2:42 pm

      Hello Chooks,
      Welcome to your new family where we understand because we feel what you feel. I think you do understand the IVIG has two purposes, to CONTROL the progression (not stop) and to try to bring about improvements and make you feel better. Sometimes both happen, sometimes only one. When the progression of CIDP isCONTROLLED, we can heal! I went through many falls and broken bones even though IVIG was working for me. After a year to a year and a half, my falls stopped and never came back. I am in my ninth year of CIDP and doing very well. I am no longer progressing and I no longer need ANY kind of treatment for this syndrome. I have gone through four years of no progression. I was SEVERELY damaged though and left with residuals so some things, for me, won’t heal. We do have HOPE, so we must NEVER NEVER NEVER NEVER give up. It takes years to recover and heal, not months. I would say give it a year, then what you are looking for is maintaining what abilities you have. You want to feel STABLE, but never worse. That’s when you”re healing.

    • Anonymous
      October 9, 2007 at 6:24 pm

      Hi chooks,
      I think you will find out there are many different stories about how CIDP effects the lives of those that have it. There is one theme that seem to run through all of them. Never give up hope! Your situation could improve significantly in a bit. Worrying about what may or may not happen will not help the situation. I’ve kind of learned to take one day at a time and try and make the best of it.

    • Anonymous
      October 15, 2007 at 6:40 pm


      I’m pretty much a new commer to CIDP too. I was first diagnosed with GBS in 2004 and then CIDP in 2006. I will say that once I got past the point of falling I never did it again…except I tripped over a cord in my bed room and down I went, but I was clumbsy before I got sick so….hahaha

      It does get better but some times it really really sucks! I’m in a suck stage myself but I do remember that I’ve always gotten out of the suckness so I’m sure I’ll pull through this one, and I’m sure you’ll pull through yours too! Just keep trying and keep hope alive!


      GBS 2004
      CIDP 2006

    • Anonymous
      October 16, 2007 at 12:35 pm

      Hi Chooks

      I’m pretty new to this, too, and things are under control, but I do still have quick flares every now and then. Controlling the panic that comes with them is the hardest thing to do, but thats easier said than done, I’m sure we’d all agree! I think its just going to take you some time to see what your patterns are – be patient with yourself.