Some questions

    • Anonymous
      June 5, 2007 at 8:14 am

      Hi everybody,

      Later of my last treatment with IVIG I feel really well, this last time I almost have recovered all my functions and I’m having an almost normal life.

      But I have many doubts: It means this that is not going to pass any more?, Can I control somehow some possible bud? , When we spoke of which this is chronic, is that it never disappears or it can be slept during a time and suddenly appears?

      That’s one reason why I do not enjoy at all the good I feel, being always thinking if this already it will be the last time.

      Please, I would thank for any experience or explanation in this sense. In this forum I have always found good friends, good advices and much support.

      Thanks to all.

    • Anonymous
      June 5, 2007 at 9:21 am

      Hello,
      I can only speak for myself, so what I say, doesn’t mean it will happen for everyone. Some of us may need to be on IVIG for a lifetime. I re-acted well to IVIG’s and I was on them for about four years, but during the second and third years, I became aware that I wasn’t having any more relapses and I’d just stay the same. I knew during the fourth year that it was time to find out how I’d do without the IVIG’s and the prednisone, so they were both stopped and I have now been off all medications, no more IVIG’s for almoust four years now. I don’t allow myself to think that I am cured now, but I can go through each year without feeling afraid about when it will come back.

      Pay attention to how you feel in-between the IVIG’s and I believe that if you feel like you are getting weaker when you are not getting them, then you still need them.

    • Anonymous
      June 5, 2007 at 11:04 am

      Hi Canarias

      It is my understanding that CIDP can definitely be relapsing/remitting. If you reflect back on your life, do you remember having periods of weakness that might have been milder episodes?

      Helen
      CIDP and CMT

    • Anonymous
      June 5, 2007 at 12:32 pm

      [QUOTE=canarias]Hi everybody,

      Later of my last treatment with IVIG I feel really well, this last time I almost have recovered all my functions and I’m having an almost normal life.

      But I have many doubts: It means this that is not going to pass any more?, Can I control somehow some possible bud? , When we spoke of which this is chronic, is that it never disappears or it can be slept during a time and suddenly appears?

      [SIZE=”4″]That’s one reason why I do not enjoy at all the good I feel, being always thinking if this already it will be the last time.[/SIZE]

      Please, I would thank for any experience or explanation in this sense. In this forum I have always found good friends, good advices and much support.

      Thanks to all.[/QUOTE]

      Canarias,

      It seems that CIDP effects each person differently. You might remain symptom free or you may not. That’s tomorrow’s problem. Enjoy today. Why worry about something that may not happen?

      Some people remain symptom free for quite a while. Others require periodic IVIg treatments to keep the symptoms at bay. Other like me just continue to slowly go down hill.

      “Carpe Diem” Seize the day or enjoy the day

      Jim C

    • Anonymous
      June 5, 2007 at 2:05 pm

      [QUOTE=Meadow]Hi Canarias

      It is my understanding that CIDP can definitely be relapsing/remitting. If you reflect back on your life, do you remember having periods of weakness that might have been milder episodes?

      Helen
      CIDP and CMT[/QUOTE]

      Well not weakness but other symptom that I call “glass bones”. During all my life from time to time I’ve felt this sensation and the only thing I wanted to do then was rest, and rest. I don’t know if mihgt be milder episodes

    • Anonymous
      June 5, 2007 at 2:20 pm

      [U]Liz,[/U] thank you, thank you, your experience has made me happy, I think that now I can go better trough it.

      By the way [U]Jim[/U] you are very right, I was a person who liked to have every thing under control, but nowadays I just don’t make any kind of plans I just enjoy as far as I can, but sometimes my mind starts flying and thinks too much.

      Again in this site, you never feel alone. Thank all of you

      Lourdes

      T

    • Anonymous
      June 5, 2007 at 9:50 pm

      I love this group! They are so patient and wise and give the best advice. I will only add be possitive and don’t let stress cause a flare up. Enjoy today! Plan for tomorrow and try to follow those plans! This time last year I was not able to do much…..today I am albe to do so much……I amaze myself and surprise others with how far I have come. When I feel good I plant a seed, so that when I have a bad day I will have flowers! Too bad Chocolate does not grow on trees around here or I would have an orchard and share with all of you!

    • Anonymous
      June 6, 2007 at 1:23 pm

      Lourdes,
      After reading many other people’s posts, I consider myself to be one of the lucky ones. Like you, my main symptom was extreme weakness. The IVIG has been a miracle for me — and for you, from what you write. I’ve been on IVIG for nearly a year. I started with 3 doses over 3 days in hospital, and then got it regularly — I’ve gone from 1 infusion every 4 weeks to 1 every 6 weeks. I don’t know if I’ll ever be able to stop getting the treatments, but it’s worth it to be able to function (almost) normally again!

      Enjoy feeling good and try not to worry,
      Caryn