Cidp And Poems Syndrome

    • Anonymous
      September 14, 2006 at 2:08 pm

      How do you tell if your symptoms are just CIDP and not POEMS that the mayo clinic is currently studying. they seem to be similar and they are doing stem cell research and chemotheraphy. cna any on shed some light on this for me please thank you. 😮

    • Anonymous
      September 14, 2006 at 4:04 pm

      At one point I was tested to see if POEMS was a possibility. POEMS stands for Polyneuropathy, Organomegaly, Endocrinopathy, Monoclonal gammopathy, Skin changes. It is an exceedingly rare systemic disorder, a malignant-like condition as I understand, of which CIDP-like symptoms are one of many. Other features could be enlarged organs, hormone problems, etc. Another common feature of POEMS are bone lesions, similar to Multiple Myeloma. Evidently, it has a poor outlook, relative to recovery. Thankfully, it was ruled out for me.

    • Anonymous
      September 14, 2006 at 10:32 pm

      I was Dx with CIDP after a spinal tap (very elevated protein levels), nerve conduction tests & EMGs, & a sural nerve biopsy. But Mayo did not stop there. The gave me 4 complete sets of MRIs to rule out MS & other things, a bone marrow biopsy & spinal nerve root biopsy to rule out leukemia & lymphoma, a lip biopsy to rule out Sjogren’s disease, CT-scans, X-rays, etc. I think a lot of diagnosing CIDP comes from ruling everything else out.

    • Anonymous
      September 15, 2006 at 2:06 am

      thank you i know that i have not had all those tests but am going to ask for sure at my next appointment thanks for the reply. they are very benificial. 😀

    • Anonymous
      September 16, 2006 at 2:23 pm

      Robert D M Hadden and Richard A C Hughes.
      “The POEMS syndrome of polyneuropathy, organomegaly, endocrinopathy, monoclonal protein, and skin changes is occasionally identified. It may be associated with myeloma, usually osteosclerotic, and Castleman’s disease. Steroids, azathioprine, melphalan, and cyclophosphamide have all been used empirically and there is no evidence on which to select any of these treatments.”
      The whole report is at [url][/url]