Welcome to Mayo Connect. I was diagnosed with WM in 2014. I am an IWMF (International Waldenstrom’s Macroglobulinemia Foundation) MN and WI Support Group Co-Leader. Since WM is so rare, most hematologist/Oncologists cannot possibly understand everything about WM let alone a second diagnosis of Amyloidosis. If you are not able to get a second opinion from one of the specialists, I suggest having your local specialist consult a Mayo specialist.
With WM, there are two mutations, found during a bone marrow biopsy. When treatment is needed, the MYD88 and CXCR4 mutations will assist the specialists in determining the best WM treatment for you. Mayo has WM specialists who also specialize in Amyloidosis.
EJ in WIsconsin