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People diagnosed with MGUS under 45
Blood Cancers & Disorders | Last Active: Jun 9 6:06pm | Replies (9)Comment receiving replies
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.
Replies to "I believe I’ve had MGUS since my 40’s. I was followed by a hematologist for two..."
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.”
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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/