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People diagnosed with MGUS under 45

Posted by DMD81 @dmdinapoli81, May 23, 2025

I was diagnosed with MGUS and iron deficient anemia at 36. I am not diabetic or prediabetic and have no autoimmune or other serious underlining health conditions. I want to know anyone else who was diagnosed with MGUS under the age of 45. All the research that is out there the mean age is mid 60s or higher. Many people who are diagnosed are in their 60s - 70s. Which 1% a year doesn’t mean much at 70(research) but at 36, that’s a different story. Someone who has a background in psychology, understands how researchers like to skew the numbers to aid their hypothesis. That’s what we learned first day of class. Why don’t they do more research solely on a population under the age of 45 and the ones that are for the younger population are so strict on their requirements that it eliminates the genpop.

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DMD81 | @dmdinapoli81 | Jan 27 3:20pm
In reply to @jrich1724 "I was diagnosed at 35 and am now 40. First test had M-spike at 0.3g/dL and..." + (show)
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I was diagnosed at 35 and am now 40. First test had M-spike at 0.3g/dL and it has gone up and done with tests every six months. Was stable for a year at 0.84g/dL then it just jumped up to 1.18g/dL. As far as I can tell my doc has been following the standard protocol for MGUS (full body x-ray, bone-marrow biopsy, 6-month CBC blood tests), but I’m starting to wonder if I should consult with another hematologist just to get another option. Any suggestions?

Since my diagnosis and the uncertainty with it, I decided I would control what I could so I have revamped my diet (a severe reduction in sugar and increased plant-based foods), and increased my cardio and weightlifting exercise. Figured that if it ever does progress to MM I will want to be in as good of shape as I can going into treatments. The uncertainty definitely takes a psychological toll, but doing something even if it indirectly benefits the condition has been helpful. I’m interested in what others do to deal with the difficulties of the uncertainty. Thanks!

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@jrich1724
Thank you so much for sharing! I think with MGUS or SMM, getting a second opinion is always a personal thing. I suggest that if it will give you peace of mind, DO IT. Find someone though who specializes in myeloma or plasma cell neoplasms. If you had a BMB what % of involvement and the other findings also should dictate the watch protocol.
I think you are on the right steps with your diet, i think the cleaner we eat the better off we are. I am by no means where i should be and am still working to get to my goal weight. but weight loss and sugar do have a positive impact on many cancers that feed off of high sugar intake individuals. in the end, they have not shown that any particular diet will stop or slow progression.
I will say this to everyone, having MGUS diagnosed young is not an automatic meaning of progression to SMM or MM. BUT, our outcomes can possibly be better due to early detection and the newly FDA approved daratumumab and hyaluronidase-fihj for high risk SMM. which has shown to slow progression.

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muse1 | @muse1 | Jan 27 10:44pm

I was dx with MGUS in 2013, when I was around 41/42. I was also found to have low almost no iron stores after a bone marrow biopsy. Insurance would not pay for iron infusions so I was given the pill, which I could not take for very long because it upset my stomach. I have not been able to get that checked again. Also, I was last followed up in 2019 for MGUS and at that time there was a little bit of improvement. Now it's 2026 and I am trying to get checked again and my primary care doctor does not seem to know what tests need to be done. The nurse said the CBC is fine for that and mine was fine so no MGUS. I know that is not the test. I guess I am just going to find an oncologist who knows what they are doing. I am not that concerned about MGUS, more needing iron checked because I am really exhausted and just want to sleep. My B12, which was low enough to need a shot, probably before 2013, is actually too high...so it's not that! Also a few weeks ago my husband was seasoning steaks and getting ready to put it on the grill and the raw meat smelled delicious! I even ate the whole steak quickly. Normally, not so much. So maybe my iron is low? Or I'm a vampire...

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jrich1724 | @jrich1724 | 6 days ago
In reply to @dmdinapoli81 "@jrich1724 Thank you so much for sharing! I think with MGUS or SMM, getting a second..." + (show)
Profile picture for DMD81 @dmdinapoli81

@jrich1724
Thank you so much for sharing! I think with MGUS or SMM, getting a second opinion is always a personal thing. I suggest that if it will give you peace of mind, DO IT. Find someone though who specializes in myeloma or plasma cell neoplasms. If you had a BMB what % of involvement and the other findings also should dictate the watch protocol.
I think you are on the right steps with your diet, i think the cleaner we eat the better off we are. I am by no means where i should be and am still working to get to my goal weight. but weight loss and sugar do have a positive impact on many cancers that feed off of high sugar intake individuals. in the end, they have not shown that any particular diet will stop or slow progression.
I will say this to everyone, having MGUS diagnosed young is not an automatic meaning of progression to SMM or MM. BUT, our outcomes can possibly be better due to early detection and the newly FDA approved daratumumab and hyaluronidase-fihj for high risk SMM. which has shown to slow progression.

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@dmdinapoli81 Thanks for your thoughts on it. I had a BMB, % involvement was not listed but the report said it was a “very low level” of involvement. That was 3 years ago.

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jellyboo | @jellyboo | 10 hours ago

Hi guys, I just made an account to share my part. I'm 32 F and was diagnosed about 4 months ago. My paraproteins are IgG type which I believe is the 'better' type to have, and 3.3 was my last levels. That seems quite high compared to everyone's here! All other tests came back normal including 24hr urine except I have suspected celiac disease but I'm not getting tested as I've followed a GF diet for about ten years now anyway. I also have eczema and A LOT of allergies. I wonder if anyone else has any of these in common? The only reason I was diagnosed is because I was having weird symptoms with swollen glands at just one side of my body, and a swollen gland in my neck which isn't getting any bigger so they're not concerned...
I also found research that MGUS is more likely to resolve in under 40s and can be a transient reaction due to infection or other inflammatory conditions, so here's hoping for us!

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