People diagnosed with MGUS under 45

As a research scientist, we don't skew our numbers to aid hypotheses. If your teacher presented otherwise, he/she was wrong. There is a lot of online misinformation posted as research. Peer-reviewed papers have rigorous levels of review and I have rejected weakly supported documents. Research is based more on what data is available, and most people with MGUS are older, so a richer data set. Not to say that research subjects are missed or under-studied, such as men's cardiovascular risk being studied more than women's. If you are interested in research, then NIH and ResearchGate are two sources. Mostly, it is important to pin down your oncologist and get a full understanding of MGUS. Consider getting a bone marrow biopsy to see if/what mutations you might have and if there are genetic reasons for your early diagnosis. Searching using "early onset MGUS" or other criteria may find more papers. https://pmc.ncbi.nlm.nih.gov/articles/PMC7873268/#:~:text=Monoclonal%20gammopathy%20of%20undetermined%20significance%20(MGUS)%20is%20rare%20in%20young,a%20lower%20risk%20of%20progression. https://pmc.ncbi.nlm.nih.gov/articles/PMC9720897/

Hi @dmdinapoli81. Doing a quick search this morning I was able to find a couple of discussions and comments by some younger members with MGUS.

This conversation was started a few year ago by @tnraemae:
~MGUS at young age
https://connect.mayoclinic.org/discussion/mgus-at-young-age/
She was 36 at the time of her MGUS diagnosis. I’m not sure she’s active in the forum right now but she may get the notice by me tagging her name. There are other members in the conversation, such as @oliviahutson, who is currently active.
~~
Another member, @nboulet was diagnosed around the age of 45 and has had MGUS for 20 years as mentioned in this post: https://connect.mayoclinic.org/comment/1198099/

And this discussion by @nick86 who was 37 at the time:
~Does anyone have any info on MGUS treatment or risk of progression?
https://connect.mayoclinic.org/discussion/does-anyone-have-any-info-on-mgus-treatment-or-risk-of-progression/
Hopefully this gets the conversations started for you with members in your demographic. Are you currently on medications or treatments to help with your anemia?

I believe I’ve had MGUS since my 40’s. I was followed by a hematologist for two years then with abnormal WBCs and rbcs, the same reason I went to a hematologist this time. Either the MGUS specific tests didn’t exist then or he didn’t do them. So it’s 1-2% per year, depending on how many characteristics one has, but who knows how long we’ve had it? The only reason we think usually those in 60s-70’s have it is because we don’t test it in younger people much whereas we do with the older population. That being said, I read a summary of a study they did in which they tested the entire country. I’ll try to find it again. Iceland, maybe? A country with a small population where it was feasible to test everyone. If I don’t report back, you might want to google it. I don’t think a more expansive testing population exists. At any rate, since none of us know when MGUS began, only when diagnosed, it is important to have the regular blood lab regiment to follow risk of progression. I was only diagnosed in March this year, but I’ve done a lot of reading. Each individual is so different and docs know so little about MGUS. I am learning some are treating smoldering earlier, instead of waiting. I think that a good strategy. My bmb is next week. The myeloma specialist who sees MGUS patients also put my numbers in the risk category. Despite the hematologist saying I was low risk, the myeloma specialist says 55% risk of smoldering. Choose doctors well.

I found the study, it was Iceland but they didn’t test the entire population, only those 40 or older. The sample was 75,000 people so pretty substantial. What I gleaned from it is to stay healthy! Ha! Here it is: https://pmc.ncbi.nlm.nih.gov/articles/PMC10690899/

I was diagnosed at 40 yrs old the progression was slow until age 65 then more yearly increase although I am still officially MGUS and get blood work every 6 months if that helps.

I was diagnosed with MGUS at age 59 in 2002. If I did not get primary care at Mayo at that time I doubt that any of the local pcps where I live would EVER have found it. All my “upper level” tests (e.g., CBC, CMP, vitamins, etc., etc.,) have always been excellent. A technologist or someone at Mayo saw my total protein was 6.6 rather than 6.7 (after major surgery mind you) and so they looked further and found the paraprotein. It was not measurable in 2002; in 2004, it was .4.
My Mayo internist had been “suspicious” in 1996 (do not remember why) and ordered a protein electrophoresis. It was normal. Possibly he was reacting to my father’s death in 1996. My dad died of Alzheimers but he had smoldering myeloma (IgA kappa with 16 percent BM).
I had a terrible time getting my dad’s myeloma diagnosed in the 1990s. I knew he was ill and took him on a round of maybe five primary care and various specialists; all ran tests and looked at me with askance: “Why are you trying to make an 82 year old healthy fit man sick?” I finally took him to Kathy Watson, a hematologist at the Univ of Minnesota. She figured it out immediately. The BMB was confirmatory as were the M spike and cells that formed a rouleux.
So your suspicion that many people might have this and not know is probably “right on.”

As an aside, my WBC and RBC bloodwork has been low for many decades. I'm 71 now, but that plus having celiac disease (increased MGUS risk) likely meant low-level MGUS, at least since my 50's. My MGUS was diagnosed 9 years ago because I have polyneuropathy that is associated with my celiac disease; without that I probably wouldn't have been diagnosed until my numbers started to ramp up 3 years ago. Hopefully your MGUS also sits or very slowly increases up over decades. My curve of my kappa and other markers has gone down this year. Most important is to avoid stress, eat well, exercise, and try to find things to look forward to every day. MGUS is a waiting game.

My daughter was diagnosed in 2019 at the age of 19 . She sees her doctor every three months for blood work and a 24 hour urine the last four checks her Kappa light Chains are slowly increasing. I worry all the time about her being diagnosed so young. It’s very stressful.

It is a very stressful diagnosis because there is not a lot out there for research of younger people only. But most will have MGUS their whole life and never move to SMM or MM.