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.