Discussions By Condition: I cannot get a diagnosis.

Does anyone have Chronic Inflammatory Demylenating Polyneuropathy?

Posted In: I cannot get a diagnosis. 4 Replies
  • Posted By: jackies daughter
  • December 31, 2009
  • 04:48 AM

I'm almost 100 percent positive I have it. However, doctors have not been much help as it is not easily diagnosed. I have pain in my hands and feet mostly but it can occur in my legs and arms too. From online research my symptoms match up. If there is anybody who has it, can you tell me what your symptoms are in detail (what makes them different from other nerve diseases) and how you were diagnosed please? Thanks.

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4 Replies:

  • I'm almost 100 percent positive I have it. However, doctors have not been much help as it is not easily diagnosed. I have pain in my hands and feet mostly but it can occur in my legs and arms too. From online research my symptoms match up. If there is anybody who has it, can you tell me what your symptoms are in detail (what makes them different from other nerve diseases) and how you were diagnosed please? Thanks.hey, my elder sister had "guillain barre syndrome" when she was 3 years old which is a simple and short form of "CIDP". since when do you have these symptoms? my sister diagnosed through "lumbal punction", did they do it to you?
    Anonymous 42789 Replies
    • December 31, 2009
    • 10:40 AM
    • 0
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  • hey, my elder sister had "guillain barre syndrome" when she was 3 years old which is a simple and short form of "CIDP". since when do you have these symptoms? my sister diagnosed through "lumbal punction", did they do it to you? It started in the fall of 2008. All winter it perserveered but it let up mostly by summer. Unfortunately it reoccurred this fall. I've researched that it almost always occurs after a viral infection. In the fall of 2006 I had an accident that resulted in a busted head. A couple weeks later my lymph nodes were swollen and infected from the cut in my head. I was medicated and thought all was well. Could this have been the source of the onset?
    jackies daughter 1 Replies
    • January 1, 2010
    • 06:17 AM
    • 0
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  • I have CIDP. I was diagnosed when I had just turned 14. I don't remember exactly the order of events of my diagnosis, but I can try...My aunty who is a paediatrician had noticed that I was walking strangely. I was clomping my feet, not doing the classic heel to toe roll motion (if that makes sense). I had also got particularly skinny (muscle wasting). The day after my 14th birthday, my parents took me to see a neurologist, and he did some nerve conduction tests on my legs (he would have liked to test my arms too, but the tests hurt, and I was a wimp...) and it was evident that my nerves weren't responding at the rate that they should have. The next day I was admitted to hospital where they did a lumbar puncture and I was started on immunoglobulin. I'm not sure if it was the lumbar puncture that diagnosed me or not (I was a bit mind-boggled by everything that was going on).I'm sure I visited other doctors before this (e.g. genetic specialists), and they ruled out genetically inherited diseases.I remember that there was talk that perhaps my condition had resulted from a virus that I had had, but whether or not this was the actual cause was never confirmed.
    Anonymous 42789 Replies Flag this Response
  • My mother was diagnosed with it, it took several years before they figured it out as well as 2 trips to the NIH. Devistating disease. She had tingling in her feet, then numbness that continued to get worse. She lost all feeling from the waist down and went from cane to walker to wheelchair within a month (probably accelerated due to the trauma of my father's death), when it affected the nerves to the diaphragm she lost the ability to breath on her own - two times she was able to come back from this when alternate nerves seemed to take over the function.
    Anonymous 42789 Replies Flag this Response
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