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CIDP

jonno1971jonno1971 Member Posts: 11 Listener
in Disabled people
Hi last week I was diagnosed with CIDP I'm jon and I'm 47.
It's a bit tough! And very confused. Start IViG on monday. Any advice guys???
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Replies

  • Ami2301Ami2301 Community champion Posts: 7,162 Disability Gamechanger
    Hi @jonno1971 and welcome to the community! Would you mind telling us what CIDP is as I'm not familiar with it :)
    Community Champion
    Disability Gamechanger - 2019
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  • jonno1971jonno1971 Member Posts: 11 Listener
    Hi. Sorry yes CIDP it is chronic inflammatory demyelanating polynuropathy. It's an autoimmune disease which attack the peripheral nerves.
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  • Ami2301Ami2301 Community champion Posts: 7,162 Disability Gamechanger
    Thank you for explaining :) I've not heard of it before, but I can relate to how you feel, not knowing what to expect or do. I have a rare neurological condition, Transverse  Myelitis and I was petrified when family and friends had never heard of it, it made me feel very isolated and confused.

    It is tough coming to terms with a new illness, overwhelming too. Has your GP/consultant explained and answered any questions you may have? Could you explain what IViG stands for please? :)
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    Disability Gamechanger - 2019
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  • jonno1971jonno1971 Member Posts: 11 Listener
    Thanks for your reply. Ivig is intravenous immunoglobulin . I start monday for 5 days of 4hrs.
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  • Ami2301Ami2301 Community champion Posts: 7,162 Disability Gamechanger
    I hope the week goes quickly for you, I used to have infusions every 6 months, 6 hours a day for 5 days. It did get very boring waiting, but the treatment really helped. I hope your treatment helps and if you would like to chat throughout the week, then we are always here :) 
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    Disability Gamechanger - 2019
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  • chiariedschiarieds Community champion Posts: 6,897 Disability Gamechanger
    Hi @jonno1971 @ClaytonGirl was just asking yesterday if anyone else had CIDP or Guillain-Barre Syndrome. So you're not alone! Her post is under the Heading of 'Talk about Specific Conditions' if you click on 'All groups' at the side of this page, then scroll down to that, then you'll see there's a sub-heading 'Neurological Conditions;' her post is the top one under that.
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