Does anyone else have MGUS?

I am struggling to cope with the fact that we both now have MGUS. I did all the research when my husband was diagnosed and asked all the questions. I didn't get much in the way of helpful answers, but my husband has never seemed over worried about the diagnosis. He has peripheral neuropathy which is how they found MGUS. I have been living in fear that he will catch COVID and have done all I can to protect him. Now I have it MGUS and am vulnerable too it is all a bit much and there is still so much I do not understand. (UK)

@award Let me add my welcome to the group here on Mayo Clinic Connect. There are many of us on this same journey, and yep, it really hits close to home when a loved one has a condition that we also get pronounced with!

Here is a link to the International Myeloma Foundation website, defining MGUS. https://www.myeloma.org/what-are-mgus-smm-mm#:~:text=Patients%20with%20SMM%20have%20a,cells%2C%20kidneys%2C%20or%20bones.

We can only do what we can do to protect ourself and loved ones from germs! I have been getting COVID vaccines since 2021, the last one just last week. When we have a compromised immune system for whatever reason, we need to make the conscious decision to keep as healthy as possible. My husband, on the other hand, is a kidney transplant recipient and seems to be skating through with little thought to maintaining his schedule.
Ginger

Welcome to this MGUS group, @award. I was first diagnosed with IgM kappa MGUS eight years ago. That was a time which coincided with my highest weight ever. Subsequently I’ve lost 10% of my weight by being careful of intake. No latest weight loss gimmicky RX for me. I don’t trust their side effects.

You will want to find a hematologist you feel comfortable with. After trying four different ones, the fifth was a charm and I adore him.

All of us in this MGUS forum may want to contribute a couple of vials of blood twice annually to the Dana Farber Cancer Institute’s PCROWD Study. They send a kit for me to take to my hematologist for blood draws to then be Fedexed back to DCFI. It feels good to participate in being proactive by contributing to future knowledge about MGUS with small gifts of my blood. I believe this research will eventually help others be less alarmed when they are diagnosed.

Wishing you well!

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?

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.

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.

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.

I was diagnosed with MGUS, IgG Kappa, in 2004. My free light chains have continued to increase but my Mspike has remained more or less constant at 0.4. MGUS is not benign. My immune system is non existent for example. I have gotten every COVID vaccine and my immune system doesn’t budge. Which means I now wear a mask every where I go.