The patient was referred to MD Anderson, where he was finally given the diagnosis of POEMS. In many cases, the first apparent symptom of POEMS syndrome is disease affecting many nerves (polyneuropathy). POEMS syndrome is a rare multisystem disorder caused by the improper growth of bone marrow cells, resulting in an abnormal accumulation of proteins (immunoglobulin) in tissues and organs. The authors report an interesting case of a 43-year-old man with a history of POEMS (polyneuropathy, organomegaly, endocrinopathy, monoclonal gammopathy and skin changes) syndrome with chronic bilateral optic disc edema presenting with sudden painless vision … It is an exceedingly rare systemic disorder, a malignant-like condition as I understand, of which CIDP-like symptoms are one of many. Mike Gaffney has collated patient experiences with stem cell transplants; to read them, click here. To add your experiences, send your answers to the questions to Mike, at captm001@icloud.com. “POEMS” is an acronym for the five most common symptoms of this syndrome: P – … The acronym POEMS highlights the most significant features of this syndrome.   As many as 50% of POEMS patients will develop diabetes. "We just don't think we're good enough at killing these plasma cells. P=Polyneuropathy. His last chance was a stem-cell transplant. Life expectancy of people with POEMS syndrome and recent progresses and researches in POEMS syndrome Translated from spanish Improve translation The life expectancy in patients with Syndrome POEMS depends mainly on early diagnosis and timely treatment, because this is a chronic condition that causes severe irreversible damage to the body. POEMS syndrome is characterized by the presence of a monoclonal plasma cell disorder, peripheral neuropathy, and one or more of the following: osteosclerotic myeloma, Castleman disease (angiofollicular lymph node hyperplasia), elevated serum vascular endothelial growth factor, organomegaly, endocrinopathy, edema, typical skin changes, and papilledema. POEMS stands for Polyneuropathy, Organomegaly, Endocrinopathy, Monoclonal gammopathy, Skin changes. POEMS syndrome affects multiple organ systems of the body. While there is no cure for POEMS syndrome, patient outcomes have dramatically improved over the past decade. ARTICLES 'Finding answers at Mayo Clinic: a reporter's tale'. Initial treatments were ineffective. POEMS syndrome specialist gave me hope — and saved my life. Most doctors have never even heard of POEMS syndrome, much less treated it. At one point I was tested to see if POEMS was a possibility. The specific symptoms present will vary from case to case. 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