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CIDP

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    CIDP

    My best friend was diagnosed with CIDP. Can anyone tell me anything about this? She has already lost a leg because of a very poor excuse of a doctor trying to blame all her symptoms on alcohol consumption. Funny thing is she quit drinking years ago.

    Thank you for all your answers.
    All sunsets are beautiful, but the most amazing sunsets have a few clouds.

    #2
    Know a little

    My neighbour has CIDP. For several years they kept telling him he was relapsing with Guillain-Barre but his wife was pretty switched on and worked out it was CIDP.

    Because of our poor excuse for a hospital he didn't get the IVIG when he needed it and nearly died. He eventually found a doctor (whose name escapes me at present) who is pretty world renowned for his work with CIDP and Guillain-Barre and was put on 1000 mg of steroids for a period of time. That seemed to be the turning point.

    He has his relapses like MSers do and his wife can always smell when he is going down hill as he gives off a particular odour. Although he doesn't complain, I'm aware that he suffers quite a lot of pain with it.

    CIDP is basically the 'inverse' of MS. Where MS is a CNS disease, CIDP is a PNS disease and (can't remember how) is more likely to directly cause death than MS. I believe it's also just like having an attack of Guillain-Barre but comes back again and again. There is apparently reasonably high chance of ending up in a wheelchair with it too.

    Although neither MS or CIDP are pleasant, I know which one I'd rather have - MS.

    Comment


      #3
      Thanks

      Thank you for letting me know what you know about this disease. I am beginning to think that there is something environmental that is causing many people in my area to have MS, CIDP, and many rare cancers. In the little community (pop. 526) I am from there are 3 with RRMS, 1 CIDP, 1 with possible MS, 1 very rare osteosarcoma, 2 with a rare spinal cancer, 1 lupus, and 2 fibromyalgia. All of these either were raised or moved into and lived for 5 + years within a few miles of where I was raised.

      One day I would like someone to do some kind of study of the area's environmental qualities. I'm afraid it may be another Flint Michigan.
      All sunsets are beautiful, but the most amazing sunsets have a few clouds.

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        #4
        Could make for a very interesting study indeed. From what I've read there has to be a genetic susceptibility for MS and if some studies are to be believed, there is a triad of things that must occur. Genetics, a stress and something irritating the immune system such as an untreated food sensitivity.

        I don't remember the specifics with the friend down the road but I do recall that a bout of food poisoning with poultry was implicated in his contracting CIDP. I don't think it was the only factor, but was definitely one of them.

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          #5
          Wow. I had not heard that.

          Where's Erin Brockevich when you need her?
          All sunsets are beautiful, but the most amazing sunsets have a few clouds.

          Comment


            #6
            IVIG FOT CIDP

            I was recently diagnosed with CIDP along with MS and lupus. I was approved and have been receiving IVIG infusions for the past 3 months and am already feeling some improvements in the peripheral neuropathy and use in my left leg. I have been able to tap my toes and cross my left leg over the right leg for the first time in at least 7-10 years. I will continue the infusions every 3 weeks and pray that improvements continue.

            It's really expensive (about $1500/infusion), but my Medicare (primary) and BC/BS (secondary) pay for it all. I am blessed.

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              #7
              IVIG UPDATE

              Just wanted to update you to let you know that I continue IVIG infusions for treatment of CIDP. I am happy to say that my Neuro is seeing measurable improvments in my left sided weakness. I am late Feb-now.

              Saw neuro this week and he is excited, but suggest the newly approved drug (is it ocra??? infusion) in addition to IVIG. Has anybody had this combination of drugs?

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