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People diagnosed with MGUS under 45

Blood Cancers & Disorders | Last Active: 1 day ago | Replies (4)

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@amberl99

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.

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Replies to "I believe I’ve had MGUS since my 40’s. I was followed by a hematologist for two..."

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/