Discussions By Condition: Blood conditions

Possible Rare Disorder Please Read

Posted In: Blood conditions 8 Replies
  • Posted By: Harvard
  • October 22, 2007
  • 01:10 PM

My oncologist has mentioned the possibility of my having the very early stages of a rare disorder called POEMS Syndrome. Each of the letters of POEMS =Poly or peripheral neuropathy, Organomegaly (either of the Liver or the Spleen) Endocrine System involvement, Monoclonal Protein, Sclerotic bone lesions.

I had a seizure (new onset) a year ago, and a monoclonal protein was found and have had a bone marrow biopsy with <3% Plasma cells found. Over the course of a year or less I have lost a tremendous amount of weight and feel very fatigued. I went back to the doctor with right upper quadrant pain radiating to the back. The doctor did an MRI and my liver was found to be “significantly” enlarged. The biopsy showed mild sinusoidal congestion. I have tangalactasias on my arms, neck, fingers and upper chest. I don’t drink alcohol and my liver panel looks good. I have also started developing symptoms of the Poly neuropathy (mild to moderate on the right and mild on the left). My right leg sometimes just gives out from under me; it does not hurt when it happens it’s just not predictable. However, severe cramping has started as of two weeks ago. Also, on a metastatic bone survey, a very early sclerotic lesion was found on the right femoral head of my right leg which is to be re-evaluated in a couple of months. Could this be causing the sever cramping of late or could it be the neuropathy? As if all of the above were not enough, I have also started having some blood sugar issues, which thus far I can control by diet. Sugar was found in my urine during some of my testing and I flunked my glucose tolerance test.

I have done some research on POEMS but the research I have found does not say how the disease progresses. Does it progress gradually with symptoms slowly developing and then worsening, or does it progress faster? The research I’ve done says it can take years to diagnose POEMS because it is so rare and usually gets misdiagnosed. I am young, about 20 years too young, according to the age range a monoclonal protein is found in a person. All of the things that are happening to me are scary. I used to be very active. Worked in the investigative field and loved it. Now, I don’t have the energy to do much of anything and on the days I do feel half way decent, I usually end up over doing it and paying for it.

Can anyone help me with my questions about how this disease progresses? Any comments would be appreciated.

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8 Replies:

  • I have come across many articles on the web about POEMS. The NORD site should have useful information as well as the mayo clinic site.good luck.
    Anonymous 42789 Replies
    • October 23, 2007
    • 03:39 AM
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  • Thank you.:)
    Harvard 20 Replies
    • October 24, 2007
    • 02:10 AM
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  • My heart goes out to you. I pray for your peace and comfort. Can you please let us know if you were indeed diagnosed with POEMS and how you are doing? Good luck.
    trigon 4 Replies
    • October 28, 2007
    • 05:19 PM
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  • The diagnosis is not yet definitive as my symptoms (of POEMS) are still emerging and developing. The oncologist who suggested I might have this disease told my family that if it was POEMS it was "VERY EARLY". I suppose this disease progresses at different rates in people and I am being monitored very closely by several doctors. From the research I have done on the disease, it states it can sometimes take years to obtain a definitive diagnosis of POEMS due to the many body systems it involves. However, I either already have most and am developing (the other) features of the disease. If this is what I have, I would rather know it as soon as possible in order to make the most of my time. I hope this is not what I have, but if it is, then I pray that I maintain my positive Christian faith, set an example of courage for my children and do it with as much dignity and grace as possible. Thank you for your kind response.
    Harvard 20 Replies
    • October 29, 2007
    • 00:42 AM
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  • The diagnosis is not yet definitive as my symptoms (of POEMS) are still emerging and developing. The oncologist who suggested that this is what I might have, told my family that if it was POEMS it was "VERY EARLY". I suppose this disease progresses at different rates in people and I am being monitored very closely by several doctors. From the research I have done on the disease, it can sometimes take years to obtain a definitive diagnosis of POEMS due to the many body systems it involves. However, I either already have most of and am developing (the other) features of the disease. If this is what I have, I would rather know it as soon as possible in order to make the most of my time. I hope this is not what I have, but if it is, then I pray that I maintain my positive Christian faith, set an example of courage for my children and do it with as much dignity and grace as possible. Thank you for your kind response.
    Harvard 20 Replies
    • October 29, 2007
    • 00:46 AM
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  • I don't know if you would be willing to try this, but I would suggest finding an acupuncturist who specializes in scalp acupuncture. I think this would be helpful as an adjunct treatment to whatever treatments you are currently receiving. Acupuncture and Traditional Chinese Medicine can be very helpful. Best wishesDOM
    acuann 3080 Replies
    • October 29, 2007
    • 03:00 AM
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  • There is a guy here where I live that does that but I don't know that much about it how can it help? Please let me know....
    Harvard 20 Replies
    • October 29, 2007
    • 02:41 PM
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  • There is a guy here where I live that does that but I don't know that much about it how can it help? Please let me know.... I cannot specifically tell you how it could help POEMS, or your condition, but can only tell you how it has helped specific patients I have had with neurological and brain disorders: Most recently I have a 34(!) yo patient presenting with almost all the symptoms of Parkinsons, without any definitive diagnosis. She has an essential tremor in right hand, bradykinesia, mask face, poor sleep, pain along entire spine...she has received only two acupuncture treatments and has already reported a decrease in pain by 70%, a huge improvement in her sleep, and noticeably less tremor. I am very encouraged by this change in her after only two treatments! I did an externship at a Rehab hospital doing aupuncture on post stroke and post accident patients. I saw incredible changes in patients with hemiplegia and neuropathy. I currently have a patient who was quadraplegic and had acupuncture immediately after his injury, and now has function in the upper part of his body. Acupuncture is amazing. I love what I do. Please consider this very ancient and very effective form of medicine. Best wishesDOM
    acuann 3080 Replies
    • October 30, 2007
    • 01:03 AM
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