Does anyone else have MGUS?

I was initially encouraged by the combined results of the Curcumin study you shared. However, upon further review of the table I’ve attached, I noticed that only patient #12 has an IgM-related condition like mine. It seems that after three years of taking Curcumin, all of her markers worsened. Perhaps I’m misinterpreting the data, but based on this single study, it appears that Curcumin may be doing more harm than good in IgM cases like mine. Now that I reflect on it, this is the only study I’ve encountered that provides a detailed breakdown of the specific changes in markers.

I do and research tirelessly with no answers...not to my satisfaction

After 3 months of tests and being poked, I was diagnosed with MGUS.

I do. Wish I knew more about what the specific numbers meant.

@kaynice Welcome to Mayo Clinic Connect. Unfamiliar terminology and all can certainly be frustrating, as we look to get more information.

While everyone is different, here is the website for International Myeloma Foundation, that has a lot of good articles for you to get lost in! myeloma.org
Ginger

@dianelouchart65 Welcome to Mayo Clinic Connect! Yes, it will often take several different tests to determine exactly what is going on with us. It's nice to be able to have accuracy, and get to understand our situation. As you will see here, MGUS is considered a benign condition, and the vast majority of people do not progress further. The "watch and wait" approach is considered standard protocol, although as patients we might find it frustrating!

myeloma.org is the website for the International Myeloma Foundation, and has a ton of educational material there for you. Healthy diet, reducing stress, moderate exercise will go a long way not only helping you feel better about yourself, but give you a chance to focus on being the healthiest you can work towards.
Ginger

Ginger, I’m a little confused if MGUS is benign why would we research on myeloma site for information I was diagnosed in November and I’m in the “wait and see” . You’re right , I hate it. Going in April for new CT and bloodwork. I eat very healthy. I exercise by walking every day and drink a gallon of water. I don’t know what else I can do. Maybe supplements I heard curcumin could help but I’m not sure who to ask about that. I keep trying to focus on the fact that it’s a one percent per year so I am 99% to the good. Next year I’ll be 98%. That’s the way I see it, but it doesn’t stop my mind from wandering.Kleo

@4kleo Here is a link to the page that speaks about MGUS, from myeloma.org: https://www.myeloma.org/what-are-mgus-smm-mm

As you can see, there is a lot of information there for everyone to digest. I will tell you my story, that I was diagnosed in 2017 with MGUS, that morphed to smoldering myeloma in 2018, and upgraded to multiple myeloma in 2019. My specialists will be the first to tell you that is highly unusual, and we joke that I am an "overachiever". I also live with an ultra rare kidney disease, fewer than 50 people in the world have been diagnosed with it.

MGUS is often found when our medical team may be looking at another different health concern.

Yes, our minds wander a lot. We get to become aware of how to quiet the niggling thoughts, the apprehension, the "what ifs" that come along with the wait-and-see approach to the MGUS condition. Remember, the vast majority of people do not progress beyond MGUS.
Ginger

Ginger, thank you so much for sharing your story. I hope and pray that your health stabilizes and does not continue to morph. It is very kind and generous of you to share and mentor those of us coming along new to this. God bless you and be well.kleo

Hello everyone, I'm a 49 yo f and was diagnosed with MGUS in April 2023. In April 2024 the light-chain ratio was within normal range. Last 6 months I've been suffering with neck pain and a specific painful spot on my spine. I just chalked it up to how I carry stress & my job. This week new pain in shoulder and shooting down my right arm, thought I should go to the Dr. He ordered xrays and I found out yesterday I have a "severe compression fracture on T6" plus some degenerate disc disease, osteophytes...basically arthritis (which is what my dr was looking for) causing a pinched nerve. He was shocked by the xray results. He ordered blood tests including light-chain and I had those done today. Saw my family dr today and she said I have osteoporosis caused by MGUS. She ordered a bone mineral density test which is booked for Wednesday. Do I need to be concerned about MM?