@ldschaefer, often a second opinion can help or at least give you peace of mind that you have pursued all options. Should you wish to consider a second opinion at Mayo Clinic, here is how you can request an appointment http://mayocl.in/1mtmR63

Get another opinion. My primary care doctor told me for years my back pain was part of getting old. Then I could not get out of bed as a plasmacytoma was impeding my spinal cord. I have a new primary and been working with surgeons to repair spine and oncologist to deal with plasmacytoma. Pian has a cause other than age.

ABSOLUTELY get a second opinion from a specialist familiar with MGUS/SMM/MM. My story is long, but is relevant to this topic as well, posted just yesterday:

I was diagnosed with IgA Kappa MGUS on 15 February 2023 – no M spike, 5-8% plasma cells in bone marrow. My husband passed from IgA Lamda Multiple Myeloma (MM) on 23 July 2022. I am hopeful because his course of development was a long one. I believe he was under diagnosed by the local hematologist / oncologist. I didn't know then what I know now. A MM specialist is a must. Steve ended up with one, but it was too late. I currently, personally have two Oncologist who's practices are specifically MM / SM / MGUS – one for a whole food, plant-based study I am involved in out of Memorial Sloan Kettering in NYC and one that is in Boston and a major research and MM expert. I live in North Carolina and will get an MM / SM / MGUS Specialist closer to home before too long. My local Hematologist / Oncologist is not the same as the neglectful one that professed to be an expert with Steve, but wise although not specialized.

Prior to formally diagnosing me, my local Oncologist conducted a bone marrow biopsy, PET-CT scan, 24 hour urine analysis, and plethora of labs. I also had my Primary Provider, who found the MGUS due to my having mentioned experiencing some neuropathy and Steve's disease course, perform an updated bone density scan for my new baseline at 65 – had one many years ago and there were no changes.

Keeping your stress down, being physically active, eating well, and being proactive in your lifestyle are believed to be beneficial. The Mayo Clinic Connect is a very helpful forum as well. We are all here for you.

Teri