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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.
Replies to "Hello @award . At 65 I too was diagnosed with MGUS on 15 February 2023. It..."
Sorry to hear couples are Dx’d with MGUS/MM😔
I was just looking around and wondered if you’d found any info regarding environmental contributors to disease? I found https://www.nbcnews.com/news/amp/rcna52948
It’s recommended to use water filtration in areas of water supply contaminated with PFAS https://www.wral.com/story/epa-more-drinking-water-systems-across-nc-contain-toxic-forever-chemicals/21012971/#:~:text=In%20North%20Carolina%2C%20dots%20light,Orange%2C%20Johnston%20and%20Nash%20Counties.
There were other sites with statistical info on the incidence of myeloma across the US, which showed NC had a significantly higher incidence, however I’m reticent to paste it here because of the additional data sets that information includes.
I wonder if MGUS/MM occurs due to exposure to toxins, and I do find it particularly surprising that you’ve both had a less common IgA sub-type when considering the chance of this occurring.
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So sorry to hear your story, but it is a comfort to know that we - as a couple - are not alone. I have been a vegetarian for many years, I do eat a little fish. My husband does eat meat, but very seldom. We have eaten organically for many years too and in the summer grow our own veg. Neither of us smoke, and I never have. My husband drinks a little, I drink too much, but mostly because of anxiety. We both keep active. He used to run and has down long distance walks.
Things are harder for him now because he has preipheral neuropathy in his feet. I am a keen gardener. I have physical issues, but I try and keep on top of those. We live in a rural area. As you say I wish we could help others, there is no point to anything otherwise is there? I wish you the very best of luck for the future.