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How do I know if I have POEMS syndrome?

What signs or symptoms may make you suspect you may have POEMS syndrome. People who have experience in POEMS syndrome offer advice of what things may make you suspicious and which doctor you should go to to receive treatment

Do I have POEMS syndrome?

POEMS syndrome is a rare disorder that affects multiple systems in the body. It is characterized by the presence of several distinct features, including polyneuropathy, organomegaly, endocrinopathy, monoclonal gammopathy, and skin changes. If you suspect you may have POEMS syndrome, it is important to consult with a healthcare professional for a proper diagnosis.



Polyneuropathy: One of the key features of POEMS syndrome is the presence of peripheral neuropathy, which refers to damage or dysfunction of the nerves outside the brain and spinal cord. This can manifest as weakness, numbness, tingling, or pain in the extremities.



Organomegaly: POEMS syndrome may cause enlargement of certain organs, such as the liver, spleen, or lymph nodes. This can sometimes be detected through physical examination or imaging tests.



Endocrinopathy: Hormonal abnormalities are common in individuals with POEMS syndrome. These may include changes in the levels of various hormones, such as thyroid hormones, cortisol, or insulin.



Monoclonal gammopathy: POEMS syndrome is associated with the presence of an abnormal protein called monoclonal gammopathy. This can be detected through blood tests that measure the levels of specific proteins, such as immunoglobulins.



Skin changes: Some individuals with POEMS syndrome may experience skin abnormalities, such as hyperpigmentation (darkening of the skin), hypertrichosis (excessive hair growth), or skin thickening.



It is important to note that the presence of these features alone does not confirm a diagnosis of POEMS syndrome. The diagnosis requires a comprehensive evaluation by a healthcare professional, including a detailed medical history, physical examination, laboratory tests, and potentially imaging studies or nerve conduction studies.



If you are experiencing any of the symptoms associated with POEMS syndrome or have concerns about your health, it is crucial to seek medical attention promptly. Early diagnosis and appropriate management can help improve outcomes and quality of life for individuals with POEMS syndrome.


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First symptoms in the fall of 2007. Had my stem cell transplant in november 2008. It helped a lot, but I still have neuropathy issues.
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Hi everyone.  So we have quite the story.  When my daughter was 6 months old, my husband hurt his back...or so he thought.  But after much massage therapy and chiro and bedrest, he wasn't improving...finally he got into a neurologist who suspected...
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It began as a cold toe. After tests were done it was decided that it was a nerve pinched in lowere back region. Chiropractor said with therapy you won't need a back operation. 2012 back operation. Neuropathy getting worse. Saw a neurologist lumber p...

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