Might Have Poems

January 11, 2010 at 7:58 pm

I too have POEMS Syndrome-
Diagnosed with CIDP in July of 2007 ( Very Early ) treated with steroids, IVIG, Plasma P and kept getting worse. In January 2008 started Chemo- no better. In March was starting Chemo Plus all of the above- kept getting worse- Late March woke in a.m. TERRIBLE lower back pain. Unable to get out of bed. Had compression fracture in Lower Vertebrae- this was the clue to POEMS confirmed with X Rays (Lesion on Vert ) and blood tests ( M Protein found ). 20 Days of Radiation in May of 2008 and have been getting better ever since. Only symptom now is some pretty nasty neuropathy in lower legs and feet, but this too may pass. Push for the tests to be done. I still watch this forum as I feel a bond with you guys – often wonder if More CIDP’ers that seeing no improvement May be POEMS! I saw Dr Gorson in Boston who is an associate of GBS/CIDP Foundation and was familiar with POEMS- MAYO Clinic in Minnesota has a ” Dr. D ” who is supposed to be a world reknowned POEMS specialist.
Keep the faith- if it is POEMS they can help you! Please feel free to contact me direct if specific questions.
Jim M