residuals and cidp

    • Anonymous
      December 17, 2007 at 10:17 pm

      There is a thread on here about post GBS residuals and they all sound like CIDP that is on going. What is the differance?
      Curious,
      Linda

    • Anonymous
      December 17, 2007 at 10:25 pm

      linda,

      in a way UR right. residuals acting up & real gbs/cidp attacks have the same symptoms. the difference ends there. residuals acting up is not a real attack & the cure for it is much rest. a real attack needs ivig, etc as real damage is being done. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      December 20, 2007 at 8:26 am

      Thanks Gene,
      So, even though I am getting treatment for the CIDP, when I am having these periods of weakness and fatigue, it is an attack? You can still have attacks [I]with[/I] the medication? I know that sounds like a stupid question, but I’m trying to understand how this conditions works with treatment since I have never had successful treatment. I felt like things were getting better finally and then this past week I have been backsliding. So thats why I asked if this is to be expected. Thanks for your input.
      Linda

    • Anonymous
      December 21, 2007 at 10:38 am

      linda,

      it is not a stupid ques. to tell if your attacks are real or your residuals you can rest alot lying down. if you feel better, you are doing too much & must do less. also you can get more cidp treatment. if it makes you feel better, you are under attack & need the more request cidp Rx.

      gene

    • Anonymous
      December 21, 2007 at 3:48 pm

      Linda, i’m also totally confused. treatment so far has not been effective. think maybe there might be some improvement in my hands with the 4th day of the second round of ivig.
      rest of body remains the same, and so weak and fatigued. zining and zapping all over the place.
      i can not tell what it all means, am i to push to do more, cut then, i can’t as the body will not respond to pushing, it shuts down and will not obey any command.
      am i to rest, feel like all i do is rest. but then i’m up every hour of the night with bladder issues.
      So, i feel for you as you sound as confused as i feel and frustrated. what do i do, waht do i expect?????????????
      hopefully reading all of the forums here and these knowledgeable people will give us some clue.
      thjinking of you

    • Anonymous
      December 22, 2007 at 12:27 am

      [COLOR=”Indigo”][SIZE=”4″]Thanks again Gene. BLSKAT, I am so sorry you are struggling too. I saw my Occupational Therapist today and she did my monthly muscle strength testing with the gadgets they use to do so and I went down by 10 degrees in strength which is significant so we talked about it possibly being a systemic flare up or muscle overuse which she thinks is unlikely.We are going to reevaluate in a week and see if a pattern emerges. All I can do is pay attention, listen to my body’s needs, and keep tract of the symptoms for reference. Mentally, I am not struggling so much because I am just resolved in the concept of acceptance and gratitude. So I hope you can do the same with not worrying but just observing and learning and adjusting as needed. Rest. I know is all we hear and I too sometimes feel like a slug, but when you give in it kind if feels good. Yesterday was the first time I resorted to using a scooter at the grocery store. Once I got over my pride and embarrassment, I actually felt so much better physically. I was really struggling with walking and standing so the scooter was so helpful. Thanks again for your input Gene and BLSKat.
      PEACE EVERYONE,
      Linda[/SIZE][/COLOR]