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Does anyone else have MGUS?

Blood Cancers & Disorders | Last Active: Jun 15 7:51am | Replies (774)

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@allstaedt57

Good morning @fayeraye .

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 have two Oncologist who's practice is 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. 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.

Prior to 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.

Teri

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Replies to "Good morning @fayeraye . I was diagnosed with IgA Kappa MGUS on 15 February 2023 -..."

I am so very sorry for what you went through with your husband. That should have never happened. My pcp never explained anything to me. He just kept running test after test because I kept getting abnormal numbers. I know I had an abnormal on IgM. Then he said I had MGUS and I will be re-tested every 6 months. So , I went to the internet.