Does anyone else have MGUS?

Hi Susan:
I was diagnosed about 2 years ago with MGUS from routine physical- trying to explore causes of osteoporosis- also newly discovered. I’m also 64, and thought I was healthy.
I’ve taken some powerful osteoporosis medication and trying to determine if that’s why I have more fatigued or if it’s from the MGUS?
MGUS supposedly is asymptomatic but I wonder.
Thought I’d reach out.
I’m supposed to be a little above average risk but who knows about these statistics,right?
Wishing you good health- encouraging to hear you’ve been stable for 10-15 years.

I’ve had it for somewhere between 10-15 years. I see a hematologist and oncologist once a year while the numbers have increased steadily, I am not at the smoldering level yet, and my oncologist says I have only a 10% chance each year of developing multiple myeloma. I’m 64.

@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

I have had MGUS for about 5 years which is low but slowly increasing. I have neuropathy and fatigue. I recently saw a number of super healthy women playing pickleball in the evening and was overcome with sadness at my disability.

I have had MGUS for about 5 years which is low but slowly increasing. I have neuropathy and fatigue. I recently saw a number of super healthy women playing pickleball in the evening and was overcome with sadness at my disability.

I was diagnosed with mgus over a year ago. Since then I have been really sick I have severe neuropathy shortness of breath.
I get no answers for the doctors. I have had bone biopsy fatpad biopsy and kidney biopsy. No answers. I hope you the best with your mgus. And I hope doctors get a handle on it I believe. It needs a lot more attention that it gets.

I'm starting to have spells my blood sugar gets really low and I'm not diabetic.

Clifford do you have any other health issues? I’m so sorry you aren’t getting the answers about your symptoms. It’s frustrating.
Have you a good hematologist/oncologist? Maybe a second opinion?
Do they do routine blood analysis to check to see if your MGUS is progressing?
I’m so sorry. Nothing worse than feeling sick unless it is feeling sick and having no answers as to why.
My MGUS was diagnosed for the first time in August 2021. If I felt bad… Which I don’t… I would consider going to the Mayo Clinic. I’m in Arkansas and not close to Phoenix or Rochester, but it would be worth it to get a second opinion. I like my hematologist/oncologist very much and we are watching my numbers. We do bloodwork every 3 to 4 months. I do have this pesky neuropathy in my feet, which somewhat limits my level of activity. I try to just carry on, ignoring my poor feet. They complain a lot but 🤷🏼‍♀️
Check back in and let us know how you are doing.
Patty