Critical Illness Polyneuropathy

    • Anonymous
      September 12, 2006 at 3:35 pm

      My mother who is 66 years of age was originally diagnosed with CIDP, but now doctors say that it is Critical Illness Polyneuropathy. I understand that this condition is quite similar to CIDP. Does anyone on this support group suffer from this condition, as I would be pleased to hear from you. Doctors say that a full recovery might take months or even years, or in the worse case she may not get her full mobility back again. She is feeling very down and is not thinking positive about being able to walk again. I would appreciate any help that you could offer us.
      🙂

    • Anonymous
      September 12, 2006 at 3:57 pm

      I have always noticed at the top of this board that it says CIP/CIDP. I guess, even after 4 years of reading this forum, that I have never known the difference. Please tell us more about your mother’s present condition & what treatments she has already had & maybe we can help more.
      Pam

    • Anonymous
      September 12, 2006 at 4:36 pm

      Hello,
      I am not sure either exactly what it is your mother has. If I am understanding things correctly, POLY means many and NEUROPATHY means nerves, which is a broad term for your mothers illness. We’ll try to give you advice, but can you tell us more. If I’m right that CIP and CIDP are different, it sounds like you’re saying your mother has CIP.

    • Anonymous
      September 12, 2006 at 10:25 pm

      Hi Andrew and welcome. Sorry to hear about your Mom but glad she is doing better. I also had never heard of this, found a good abstract online about it though:

      [COLOR=blue]ijccm.org/article.asp?issn=0972-5229;year=2005;volume=9;issue=1;spage=32;epage=34;aulast=Vijayan[/COLOR]

      [B](cut and paste it)[/B]

      A google search brought up many more links. Best wishes to her and to you and your family.

      Jerimy

    • Anonymous
      September 13, 2006 at 3:14 am

      Andrew, CIP or critical illness polyneuropathy is the result of severe illness usually with multiple organ failure and septicaemia (in70%) from many other causes.
      It is seen in intensive care units where it occurs in about 2-3% of patients. It is an axonal demyelinating polyneuropathy,it is made worse by steroids, there is some anecdotal evidence that IVIG (immunoglobulins) may help. The outcome is not good.
      Why was your mother so extremely ill in the first place, the underlying illness have to be dealt with first.
      I hope she is beginning to recover, this must be so hard for you as she is quite young, my age in fact. DocDavid

    • Anonymous
      September 13, 2006 at 2:25 pm

      Hi everyone on this site and thanks for your messages especially DocDavid for is expert advice.
      My mother whos name is Christine was rushed into hospital on February 10th of this year when she was diagnosed with Sepsis Neumonia. She had multiple organ failure and was in intensive care and on dialysis for about 1 month. It was really touch and go because on one weekend the doctors said that she was not going to survive because she was so sick. They gave her a drug called Xigris which is manufactured by a company called Lilly Pharmaceuticals which is prescribed for severe cases of sepsis which I know made her better, because all of a sudden she was beginning to improve in her condition. She is one lucky person to survive this because the doctors said she should not be alive. They began to bring her off the ventilator and she then had to have a tracheaostomy.
      She is on various drugs including Gabapentin, but I would like more information especially off Doc David about IVIG immunoglobulins.

      She is currently hoisted in and out of bed and is confined to a electric reclining chair until she has a powered wheelchair which we are waiting for at this present time.

      Thanks again I hope you can help me.:)

    • Anonymous
      September 14, 2006 at 5:30 am

      Andrew, the responses of Critical Illness Polyneuropathy to IVIG are purely anecdotal.
      As far as I know no controlled trials have been done, in medicine this is the only way of providing statistically supported evidence that a treatment works.
      I suggest you discuss a trial of IVIG with her neurologist. DocDavid

    • Anonymous
      September 14, 2006 at 1:34 pm

      What is the differnce of cip to cidp . can you describe this to me. please thank you

    • Anonymous
      September 14, 2006 at 4:38 pm

      I think Doc David would be better explaining this than me. All that I know that CIP is a common complication of sepsis and multiple organ failure. Its most common way of presentation is muscle weakness and difficulty weaning from a ventilator.:confused:

    • Anonymous
      September 15, 2006 at 5:19 am

      Nebraskafan. Herein lies the problem with abbreviations. CIP is described above, it is of rapid onset, a multi-neuropathy secondary to severe near fatal illness such as septicaemia. CIDP is Chronic Inflammatory demyelinating Polyneuropathy, typically developing slowly over months or years and thought be an auto-immune disease where our own antibodies begin to destroy the myelin in the outer insulating coat of the peripheral nerves. CIDP shows a good response in many cases to IVIG or Plasma Exchange (plasmapheresis) and immuno-suppressant anti-cancer type drugs It often responds to steroids which are a no no in CIP. CIP has no specific treatment, but IVIG may possibly help. Have I muddied the water, or clarified it? DocDavid

    • Anonymous
      September 15, 2006 at 4:05 pm

      DocDavid,

      Have you ever thought of writing a book or paper of some kind with medical information phrased in layman’s language? You have such a good way of describing things that make them so clear.

      Best wishes,

      Suzanne

    • Anonymous
      September 16, 2006 at 2:56 am

      Suzanne, thank you for the compliment. I am very happy writing here and on gbs.org.uk I on the other hand, am so impressed by the emotional support given by others to the newcomers. We all work together to the benefit of those with troubles. Good wishes David

    • Anonymous
      October 2, 2006 at 8:15 pm

      Doc and this site made possible my learning of rituxan. I then passed it on to my neurologist. I feel a great debt to all of them.

    • Anonymous
      October 2, 2006 at 11:38 pm

      John,

      My memory is so bad:o , I had read a number of posts last week regarding rituxan, and commented on a few. Have you had a Rituxan treatment yet? If so, how do you feel now?

    • Anonymous
      October 3, 2006 at 6:28 pm

      I have been on rituxan for about 2 years, my memory is awful so give or take. Yes, it helped me immensely where ivig failed. The only time I lose anything on Rituxan is when I get sick, then the disease attacks me ferociously. Its holding me pretty steady.