Does anyone else have MGUS?

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!

@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

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, I moved your posts about being recently diagnosed with MGUS only 2 years after your husband was diagnosed to this existing discussion:
- Does anyone else have MGUS? https://connect.mayoclinic.org/discussion/mgus-diagnosis/

I did this so that you can easily connect with many knowledgeable and supportive members like @pmm @mjlandin @gingerw @ea1 @raye @whitepine66 @mommatracy5 @leslie2121 @sharon55 and many more.

Despite your doing research when your husband was diagnosed, I get what you mean when you say there is still so much to learn and understand. It's overwhelming! But one can only take one step at a time. And now you have a support group ready to walk beside you, answer questions, calm concerns, and help you find out what you need to know.

You're not alone.

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)

I am told now by 3 oncologists I have POEMS. ( an ugly step sister - I made that name up) of Malignant Myeloma. If they are all correct I will find out lots more when I appear for my appt 11/29 at Moffitt Cancer Center Tampa Fl for my initial eval. I have had 6 month of studies no treatment start was BLUE FEET 👣 PERIPHERAL NEUROPATHY- then hypothyroid NEW Diagnosis at age 70 monoclonal gammopathy & a bone 🦴 lesion S1.

Hi I have had MGUS for four years! I have labs every 3 months.
My brother in law has Myeloma & it is close to 5 years since he was diagnosed. In the last year his health has greatly deteriorated. Praying for him!