Discussions By Condition: I cannot get a diagnosis.

Poems Syndrome (Rare Disorder) Please Help

Posted In: I cannot get a diagnosis. 0 Replies
  • Posted By: Harvard
  • October 20, 2007
  • 00:50 AM

I have had unusual symptems and the oncologist suggested the possibility that I may have a very early form of a rare disorder called POEMS syndrome. POEMS syndrome stands for Polyneuropathy, Organomegaly, Endocrine, Monoclonal Gammapathy (MGUS), Sclerotic bone lesions.

This is a very rare condition in which certain criteria in order to have a definitive diagnosis are required. For instance, you must have the (P) Poly or peripheral neuropathy, Organomegaly (either the liver, spleen or both) and a Monoclonal Gammapathy usually the protein spike is not high as in multiple myeloma.

I have been diagnosed with the Monoclonal Gammapathy with < 3% plasma cells, my liver is significantly enlarged and an extrememly early sclerotic bone lesion was recently found. Recently I underwent EMG type testing and was found to have mild to moderate polyperiperal neuropathy on the right and mild on the left. I have also had some small sugar issues which are controlled at this time by diet.

I also have tangalactasia's on my arms, neck, hands and fingers (which is another distinguishing feature of POEMS.

I would like to know how fast things progress in this disease (if in fact this is what I have). I have researched POEMS syndrome but can find nothing on how slowly or quickly this disease progresses in its earliest form.

If anyone can shed some light on this, it would be greatly appreciated.

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