It's P.O.E.M.S. Syndrome.
That's what the mystery-solving team in the Oncology/Hematology Clinic at Walter Reed National Military Medical Center in Bethesda, MD came up with after consulting with docs at The Mayo Clinic.
No, you're right. We'd never heard of it either. So far none of my VA docs have heard of it. The Mayo Clinic website describes it as "extremely rare. To explain, P.O.E.M.S. is an acronym for the syndrome's most common signs:
- Polyneuropathy: Nerve damage causing numbness, tingling and weakness of the hands and feet.
- Organomegaly: Organ enlargement of liver, lymph nodes or spleen.
- Endocrinopathy: Abnormal hormone levels.
- Monoclonal protein: A collection of abnormal blood proteins (immunoglobulins) made from bone marrow cells called plasma cells; also called monoclonal immunoglobulin.
- Skin changes: Increased skin pigment, increased body hair, thickening of the skin and whitening of the nails.
Aren't you glad you asked?
To break it down, P.O.E.M.S. is a blood disorder that affects many of your body systems and causes damage to your nerves. It may occur because of the growth of certain bone marrow plasma cells that produce an abnormal amount of blood proteins, which damage body organs.
It's treatable - chemo - but we can't start yet because of some other weirdness going on in my body.
Another good question I've heard... How sure are they? Well, the diagnostic process is pretty objective, blood test and such, so it' not as hard to nail down as, say, fibromyalgia or Chronic Fatigue Syndrome. They're sure - and they're optimistic.
And that's about all we know right now. It doesn't look like there's a lot more to be known. It's just that rare. No drug trials, no no long-term patient studies.
For nearly five years y'all have stood with us as we've struggled with this mystery illness. Y'all have kept us fed, warmed, and indoors. You've encouraged, comforted, and listened patiently. We can never begin to repay all the kindnesses we've received.
Thank you.
And please do stay in touch. We love hearing from y'all. My long silence and general unresponsiveness was a matter of disability, not distancing ourselves.
Two final things:
I'm not contagious (really!) and I'm still doing my best to be a pastor to anyone who needs a pastor (John Wesley's "The world is my parish." pretty much applies.). Don't hesitate.
God bless you all!
Daniel
P.S.Do feel free to pass this along to people who care. Too many military moves and my medically-forced retirement caused us to lose track of many we care about. Please get back in touch.
That's what the mystery-solving team in the Oncology/Hematology Clinic at Walter Reed National Military Medical Center in Bethesda, MD came up with after consulting with docs at The Mayo Clinic.
No, you're right. We'd never heard of it either. So far none of my VA docs have heard of it. The Mayo Clinic website describes it as "extremely rare. To explain, P.O.E.M.S. is an acronym for the syndrome's most common signs:
- Polyneuropathy: Nerve damage causing numbness, tingling and weakness of the hands and feet.
- Organomegaly: Organ enlargement of liver, lymph nodes or spleen.
- Endocrinopathy: Abnormal hormone levels.
- Monoclonal protein: A collection of abnormal blood proteins (immunoglobulins) made from bone marrow cells called plasma cells; also called monoclonal immunoglobulin.
- Skin changes: Increased skin pigment, increased body hair, thickening of the skin and whitening of the nails.
Aren't you glad you asked?
To break it down, P.O.E.M.S. is a blood disorder that affects many of your body systems and causes damage to your nerves. It may occur because of the growth of certain bone marrow plasma cells that produce an abnormal amount of blood proteins, which damage body organs.
It's treatable - chemo - but we can't start yet because of some other weirdness going on in my body.
Another good question I've heard... How sure are they? Well, the diagnostic process is pretty objective, blood test and such, so it' not as hard to nail down as, say, fibromyalgia or Chronic Fatigue Syndrome. They're sure - and they're optimistic.
And that's about all we know right now. It doesn't look like there's a lot more to be known. It's just that rare. No drug trials, no no long-term patient studies.
For nearly five years y'all have stood with us as we've struggled with this mystery illness. Y'all have kept us fed, warmed, and indoors. You've encouraged, comforted, and listened patiently. We can never begin to repay all the kindnesses we've received.
Thank you.
And please do stay in touch. We love hearing from y'all. My long silence and general unresponsiveness was a matter of disability, not distancing ourselves.
Two final things:
I'm not contagious (really!) and I'm still doing my best to be a pastor to anyone who needs a pastor (John Wesley's "The world is my parish." pretty much applies.). Don't hesitate.
God bless you all!
Daniel
P.S.Do feel free to pass this along to people who care. Too many military moves and my medically-forced retirement caused us to lose track of many we care about. Please get back in touch.
