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The IMF is informed about POEMS Syndrome, and the Mayo Clinic diagnoses it. Of course, if you are not rich and have an HMO that does not cover testing at the Mayo Clinic, you obviously won't get diagnosed. Been there, done that. Instead, you will just get lies from doctors who do not know how to diagnse POEMS.
POEMS is an acronym for the syndrome's most common symptoms:
P - polyneuropathy: nerve disease (numbness, tingling, and weakness of the hands and feet).
O - organomegaly: organ enlargement (liver, lymph nodes or spleen).
E - endocrinopathy: disease affecting hormone-producing glands (sexual development, metabolic functions, thyroid hormones, etc.).
M - monoclonal gammopathy or monoclonal plasma proliferative disorder: a collection of abnormal blood protein cells.
S - skin changes: increased skin pigment, increased body hair, thickening of the skin, whitening of the nails, etc.
To receive a diagnosis of POEMS syndrome, patients must experience at least the "P" and the "M" as well as either sclerotic (scarring) bone lesions or Castleman disease, a coexisting condition. Patients will typically have at least one other feature (the "O", "E", or "S") as well as some abnormalities listed below.
Common abnormalities included in the syndrome include:
- Fatigue and weakness
- Edema (swelling of the ankles and legs)
- Enlarged breast tissue (occurs in both men and women)
- Generalized aches and pains
- Ascites (fluid collection in the abdomen)
- Pleural effusion (fluid collection in the lungs)
- Increased blood cell counts (increased platelet or red cell count)
- Changes in vision
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