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Has anyone heard of CIDP?

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    #1

    Has anyone heard of CIDP?

    Hello everyone,
    I have been dealing with many neurological symptoms for many years now. My neurologist was thinking MS checked all the boxes of my many symptoms. However I just got results back of MRI and my brain and all three regions of my spine are clean. No white matter.


    Now I hear about CIDP. (chronic inflammatory Delineating polyneuropathy )My question has anyone heard of this and has anyone gotten this diagnosis instead of MS?

    I do have a distant relative on my mother's side who I head had this and died from it.

    I also want to say this forum has been so helpful. Its the only one I have found that offers support for people in limbo.

    Thank you for your help
    Tags: None
    #2
    Hi,

    This is the first thing that was ruled out for me.

    I think it's related or is also similar to Guillan Barre (sp?) as well.
    Take care,
    swingingwillow
    Limbo lander on hold with a fast busy signal...

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      #3
      Thank you for your reply. I just feel a little overwhelmed. I posted a question on the CIDP forum and got some good info. I just don't feel as if I fit into any box. I could relate so much to so many threads here and now don't know were I belong. I am having nerve conductivity test on April 3rd so maybe I will get more answers. Thank you again for your response.

      Comment

        #4
        Hello lilbitOcrazy,

        MSWorld have had members who went on to be diagnosed with CIDP.

        It's not uncommon for those that end up receiving a diagnosis different than MS to not stay around a MS forum.

        For that reason I would highly doubt someone with CIDP would be around this forum to answer your question.

        Best wishes on your diagnostic journey.
        Diagnosed 1984
        “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

        Comment

          #5
          CIDP

          I was diagnosed with Optic Neuritis in 2007. In 2011 I started to have neurological symptoms .....numbness, tingling, fatigue, sensory nerve damage, neuropathy in feet and hands, carpal tunnel in both hands, double and blurry vision, dizziness. Tests results were: LP normal except for elevated protein (classic CIDP finding) and MRI normal so the investigations began. Evoked potentials SSEP (lower limbs) abnormal and EMG normal. I had no reflexes and was diagnosed with CIDP. CIDP affects the peripheral nerves not the CNS.

          Fast forward to 2014 I now have hyperreflexia, positive Babinski and Hoffman's and spasticity. Diagnosed with Myelopathy and sent back into the MRI's for MS.

          CIDP and MS are (for a lack of better term) cousin diseases. Most of there symptoms can overlap.

          Comment

            #6
            Thank you for your reply Gloria
            it has been so puzzling I have been having neurological symptoms off and on since I was 18. more off than on. I am now 36

            Since last November my symptoms got much worse I would have an episode were my legs would be so weak and stiff I could not walk. I would have to walk like a zombie because my knees or ankles would not bend or my knees would be so weak they would buckle.

            it would last two or three weeks than take months to get stronger. This would come on every few months. Other times it would be my arms too week to hold or carry things. I drop things all the time.

            Now I don't really fully recover. I just have times when I can't function at all and then other times when its a fight every day to do my daily activities.

            I have a ton of other symptoms like ice/hot feeling on top of head and hands and feet ,feelings like rubber bands are around my thighs or upper arms,Incontinence issues , pain in low back and nap of neck, cognitive issues sometimes I look drunk I feel so out of it, spastic muscles, Etc.

            do you think these lines up with CIPD?

            I have my nerve conductivity test next Thursday.


            Any info you feel up to sharing about your symptom progression would be helpful.

            Thank you all

            Comment

              #7
              [QUOTE=.[/QUOTE]

              One of those days

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                #8
                Oh dear. What's going on glory?? Anything a bit of moral support on here could help with??

                Comment

                  #9
                  Any answer better than none

                  I sympathize with all of you who are looking for answers and I hope we all get some sooner or later. I don't know much about this condition and I think it is rare, I am sure we can all agree we don't want anything, but anything is better than not knowing. If it's CIDP, I will accept it.

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