Does anyone else have MGUS?

Hi!
I just found this post, I know it’s an older one but thought I’d hop in here anyway & hopefully someone will respond back.
I was diagnosed with MGUS about 30yrs ago. Nobody seemed to know much about it & I pretty much figured I’d be dead by now.
It was terrifying. I still had 2 kids at home & so I made my arrangements for after I passed. I was in my late 30’s. Most of the Drs were wrong about what was happening in my blood. And no one could tell me why I kept getting DVT’s. Finally after my last clot in my IVC in 2016 I saved some money & went to Mayo.
I finally found Drs who could tell me exactly what was going on. Absolutely incredible! I even had a BMB. I had refused one for many years because I didn’t trust anyone.
I’m at 5% myeloma cells & was told they don’t treat unless you’re at 6%.
And then of course COVID hit, I lost my mom, family moved, I moved….just life in general happened.
Recently tho my blood tests from my GP have shown a few changes.
I don’t know if it means anything or not but I feel like I’ve been very fortunate to have lived with MGUS for so long & will probably continue living with it without it turning into MM.
I’m also thinking about joining a clinical trial if it would help understand this disorder for others & possibly even take away the chance of it ever progressing.
Has anyone on here ever been part of a trial?
Thanks for listening & I wish all the best!

Hi @kk1221, you are a welcome asset to the group, having lived for 30 years and counting with MGUS. Your experience and knowledge will be especially helpful to those members who are recently diagnosed with MGUS. You can use the group search to find MGUS related discussions. For example, I think you might be interested in these 3 to start:
- MGUS at young age https://connect.mayoclinic.org/discussion/mgus-at-young-age/
.
- MGUS Bloodwork Frequency https://connect.mayoclinic.org/discussion/mgus-bloodwork-frequency/

- Is there anything to help stop or slow progression of MGUS? https://connect.mayoclinic.org/discussion/stopping-progression-of-mgus/

Thank goodness you were able to get the diagnosis and care you needed at Mayo Clinic. I can imagine you are concerned about the recent changes in your blood work. Has your GP suggested a clinical trial for which you may be eligible?

I was diagnosed with MGUS in 2015 at age 64. Since that time, my numbers have been stable. I will post later what they are. My question has to do with the above posting mentioning arthritis inflammation. I have pain in multi areas of body but not in the joints. More like sore areas in ligaments and muscles and random tissue areas. Pain in back, hip and SI areas. Anyone else experiencing this?

Hi Colleen!
Thank you so much for the welcome and the links to look at.
It’s been an “up & down” journey for sure. I guess I feel like the older I get the greater the odds of progressing to MM.
My GP doesn’t check my MGUS at all. Not surprising since the Drs at Mayo told me there was no one qualified to keep an eye on it in my area.
So I haven’t had it checked since 2018 I think. My next appointment coincided with the beginning of the pandemic & I was afraid to travel anywhere.
I would really love to find out about a clinical trial that I would fit in.
I was very fortunate to have seen Dr Kapoor and I know he is an amazing researcher on MGUS.
I will keep looking and hopefully this next year can get back up there.
Again, many thanks and if I can help reduce the fear of living with this condition, or answer any questions for someone, I’m happy to do so.
Kaylynn

I have had MGUS for 20 years, I was diagnosed at the age of around 45 years old, the value numbers were so low. I was told not to worry about it, in the last two years, the MGUS blood test value numbers, 2022 Christmas time 173 and then November 2024 the value numbers increased 400% to 685. I am waiting to get to see a hematologist. Not sure what these value numbers are all about. Also, I have been living with progressive neuropathy. that has got worse in the last two years, no balance hard to walk as I am now 65 years old.

I have had MGUS for 20 years, I was diagnosed at the age of around 45 years old, the value numbers were so low. I was told not to worry about it, in the last two years, the MGUS blood test value numbers, 2022 Christmas time 173 and then November 2024 the value numbers increased 400% to 685. I am waiting to get to see a hematologist. Not sure what these value numbers are all about. Also, I have been living with progressive neuropathy. that has got worse in the last two years, no balance hard to walk as I am now 65 years old.

Agree there is no link established (yet) with any known cause for MGUS, but human nature is to try to do what we can to feel in control vs feeling helpless.
I have questioned links with vaccines, weight/diet and stress levels (chronic and/or acute trauma).
I had to have the rabies series shots and immunoglobulin treatment recently (tried to pet a stray dog in Turkey that bit me!) and m protein remained too low to detect. But FLCs went up. Will recheck in May but maybe it will return to baseline.

Also, I have discovered a connection between stress and FLCs and found it does increase during physical and psychological stress. I experience increased thirst and slight bubbles in my urine that last a few hours before returning to normal when I feel anxious or stressed about something.
I try to be more aware of my stress response and include relaxation practices- hope this was helpful!

I have had MGUS for 20 years, I was diagnosed at the age of around 45 years old, the value numbers were so low. I was told not to worry about it, in the last two years, the MGUS blood test value numbers, 2022 Christmas time 173 and then November 2024 the value numbers increased 400% to 685. I am waiting to get to see a hematologist. Not sure what these value numbers are all about. Also, I have been living with progressive neuropathy. that has got worse in the last two years, no balance hard to walk as I am now 65 years old.