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. "There are a lot of POEMS patients who do amazingly well for decades, but we don't promise or suggest what we're doing is curative," Dr. Dispenzieri says. Mike Gaffney has collated patient experiences with stem cell transplants; to read them, click here. 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. "We just don't think we're good enough at killing these plasma cells. 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'. 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 … The specific symptoms present will vary from case to case. Most doctors have never even heard of POEMS syndrome, much less treated it. The patient was referred to MD Anderson, where he was finally given the diagnosis of POEMS. Initial treatments were ineffective. His last chance was a stem-cell transplant. At one point I was tested to see if POEMS was a possibility. The acronym POEMS highlights the most significant features of this syndrome. P=Polyneuropathy. Its name is a combination of the names of each system it affects and the symptoms patients may experience: polyneuropathy, organomegaly, endocrinopathy, monoclonal protein, and skin abnormalities. POEMS syndrome specialist gave me hope — and saved my life. POEMS syndrome affects multiple organ systems of the body. POEMS stands for Polyneuropathy, Organomegaly, Endocrinopathy, Monoclonal gammopathy, Skin changes. To add your experiences, send your answers to the questions to Mike, at captm001@icloud.com. POEMS syndrome is an extremely rare blood disorder that affects several body systems. It is an exceedingly rare systemic disorder, a malignant-like condition as I understand, of which CIDP-like symptoms are one of many. And some neurologists wouldn’t recognize the disease if they saw it. 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. 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