Does anyone else have MGUS?

Hi I was just diagnosed I have so many ? My doctor order much more lab & X-ray so I guess I’ll know more after those results.

Many of us are doing watchful checkups with hematologists we like. (First I found four I didn’t like.) My IgM Kappa MGUS was diagnosed in 2015. It continues to gradually elevate while being said to be stable.

In researching online it is important not to gain weight, to prevent progression to SMM or MM I’ve read. My all-time highest weight was when it was first diagnosed. Now working on that and weigh 8% less.
Also try to avoid fats. Since Mayo Clinic was the first in the world to diagnose it, find their online peer reviewed research about MGUS and learn more. Don’t be taken aback by medical language, just keep going. Life is an adventure!

One important caveat, MGUS may change the way your body reacts to vaccines. After 4 Modernas (2+2) my body has consistently tested as being immunocompromised. Ouch! That is the worst thing about this diagnosis so far. I’m staying well, but sequestering as though unvaccinated. Missing usual social life, but continuing to connect in other ways. Suggest getting your immunity checked. Wishing you well!

Hi @mjlandin
I was diagnosed with MGUS last July via standard tests related to Neuropathy.
M-Spike on serum electrophoresis of 0.2 and IgG kappa but with normal hemoglobin and normal serum free light chain ratio. I will continue to have blood tests every 6 months per my Hematologist. About 5% of adults over 65 have MGUS per Mayo Clinic study and only about 1% per year will progress to MM. I don’t worry about this condition at the moment since there is nothing that can be done to treat it or reduce the odds to migrate to SMM or MM.

@mjlandin Welcome to Mayo Clinic Connect.

There are several discussions here in the Blood Cancer & Disorder group that speak about MGUS:
https://connect.mayoclinic.org/discussion/mgus-and-quite-high-free-kappa-light-chain-and-kappa-lambda-ratio/
https://connect.mayoclinic.org/discussion/multiple-myeloma-299aae/
From the Mayo Clinic website is this information: https://www.mayoclinic.org/diseases-conditions/mgus/symptoms-causes/syc-20352362

From the International Myeloma Foundation is this very informative article: https://www.myeloma.org/what-are-mgus-smm-mm

For my case, I was diagnosed with MGUS thanks to an observant nephrologist [kidney disease unrelated to MGUS]. It then advanced to smoldering multiple myeloma, in a short time, which is very unusual, and in a year advanced to multiple myeloma, again unusual. I will say my health journey has never been normal, so why should I stop now? The vast majority of people live for years with MGUS and no further complications, going through quarterly or semi-annual bloodwork for monitoring values.

Feel free to ask away!
Ginger