I am currently in the prep stages for a stem cell transplant - my early numbers were 0.47 g/dl - now down to 0.31 g/dl after 4 cycles of CyBorD. My diagnosis is osteosclerotic myeloma (similar to POEMS syndrome, but without the neuropathy). But since they found many sclerotic lesions in the bone, the disease is considered active and needs full treatment.
It pays to see someone who knows where to look for additional symptoms of this specific disease, which may not be evident in blood work alone. But don't worry, this is a lengthy process - finding out just what it is and what point in the disease you may be at. I have full confidence in my myeloma specialist, he is one of the best in the country.
It is important to feel comfortable in these conversations when decisions are being made. Do research, be pro-active, and please try not to obsess about this. One day at a time
