Connect
← Return to Does anyone else have MGUS?
Discussion
Blood Cancers & Disorders | Last Active: May 5 6:09pm | Replies (751)
Comment receiving replies
I am 62 and was told yesterday that I have MGUS, picked up during blood tests following heart palpitations. My husband, now 75, was diagnosed in 2021 as a result of presenting with peripheral neuropathy in his feet. Are there any other couples who have both been diagnosed out there, and why have we both got it? We have been married just 12 years, have lived together for 14 years, have always tried to live a healthy lie style in rural Gloucestershire UK. Can anyone help?
Replies to "I am 62 and was told yesterday that I have MGUS, picked up during blood tests..."
Connect
Hello @award .
At 65 I too was diagnosed with MGUS on 15 February 2023. It was incidentially due to slight neuropathy in my fingertips and toes. I have IgA Kappa MGUS – 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, performed 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.
So, yes, there are other couples out here, we were one of them. I ask the same question, "Why have we both gotten it?" We were married for 24 years before Steve passed, were together for like 26.5 years. Like yourselves have lived a healthy life style, been physically active, non-smokers, minimal drinkers, eaten organically, avoided chemicals, live in an older brick home which has hardwood floors, and low VOC paint. Something environmental is attacking us. Wish we could make a difference for others to discover what that could possibly be.
Best wishes to us all.