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Does anyone else have MGUS?

Posted by mjlandin @mjlandin, Jun 4, 2022

I was diagnosed with MGUS last October and although I've done a lot of research, I feel there's still so much I don't know. Does anyone else have MGUS?

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karishmagupta | @karishmagupta | Dec 31, 2024
In reply to @pmm "The reason that I chose not to have a bone biopsy at this time is, I..." + (show)
@pmm

The reason that I chose not to have a bone biopsy at this time is, I asked my hematologist/oncologist if my blood analysis was at current levels, what difference would it make in my treatment regimen? Would there be active intervention rather than “watch and wait.” He said no, it would not make any difference and we would continue to watch and wait. The bone marrow biopsy gives them diagnostic information which your physician may or may not feel is necessary. It’s worth having a discussion about how the results would change the trajectory of your mother‘s care before she is subjected to that. It is a minimal risk to her health, but I always opt to take the most conservative approach that makes sense to me and to my physician at the time.
https://pmc.ncbi.nlm.nih.gov/articles/PMC6334115/

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Our haemotologist performed bone marrow aspiration and biopsy yesterday.The bone marrow aspiration i have attached hereby.Can you please explain if there is any abnormalities in this you see regarding MM

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1 reply
2121 | @leslie2121 | Dec 30, 2024
In reply to @hsminc "Your entry was most interesting to me. I have IgG lambda MGUS. My free light chains..." + (show)
@hsminc

Your entry was most interesting to me.
I have IgG lambda MGUS.
My free light chains (both kappa and lambda) escalated to very high levels when I was exposed to COVID by our cleaning people. I was asymptomatic but clearly had a case of Covid.
My kappa went to normal within a couple of months but the lambda stayed high.

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I have read that FLCs rise due to infection which makes sense since you had covid. Don’t understand about why lambda would stay elevated but not kappa.
Both kappa and lambda were elevated at my MGUS diagnosis over 3 years ago but now just the lambda remains high. Just within normal range ratio.
I see a MM doc who is monitoring me and thinks it’s nothing to worry about. The M spike isn’t detectable since initial level of 0.2 g/dl in 2021.

FLCs can be high if you have kidney disease but that’s normal for me. And connected to autoimmune diseases.

I think there’s a lot of research currently about FLCs and why they are elevated etc.

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tesflo1 | @tesflo1 | Dec 29, 2024
In reply to @kk1221 "Hi! I agree with checking for an autoimmune disease. I’ve had 4 different drs, including one..." + (show)
@kk1221

Hi!
I agree with checking for an autoimmune disease. I’ve had 4 different drs, including one at Mayo diagnose me with Fibromyalgia. I definitely have the aches you’re describing. But I don’t know that it has anything to do with my MGUS.
My initial finding of MGUS was actually a polyclonal one. Meaning that instead of a monoclonal, one, I had two spikes. One slowly went down over the years & then I was diagnosed with chronic Lyme disease. Related? Not sure. But you can drive yourself crazy trying to understand this glitch we have in our blood. I threw away an entire box of research & decided to do what the drs told me….go live your life & let us take care of this.
Best advice ever! I will always wonder if my bad days, or new pains are the MGUS, but I probably won’t ever have the definitive answers I’ve searched for. Try not to let it overwhelm you, it’s just there for now.

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How were you and who diagnosed the chronic Lyme? I’ve been told I may have it, Lyme tests showed some positive tests but my RA DR AND PCP won’t “diagnose” bc they don’t treat it. Found out I have MGUS recently - don’t know what to do with that one either - except yearly tests. I’m interested in getting Lyme diagnosed to see what can be done bc maybe it’ll help with all I have.

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2 replies
mikxtr | @mikxtr | Dec 29, 2024

Hello,
I've noticed that my urine sometimes is a smidge more bubbly than normal, and sometimes it looks like there's lots of ... little stuff ... floating in it. Not fine enough to call it cloudy but not large either. Has anyone else had this issue? I'm worried about excess protein. My latest round of tests have my FLC amounts and ratio within normal levels but M-Spike popped up slightly to 1.3 from 1.2 six months prior. Currently on an annual testing cycle but the urine has me concerned. No other symptoms, luckily.

Just curious if this is something I should contact my doc about. Thx.

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1 reply
Mentor
Patty, Volunteer Mentor | @pmm | Dec 28, 2024
In reply to @nboulet "I have had MGUS for 20 years, I was diagnosed at the age of around 45..." + (show)
@nboulet

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.

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@nboulet
When you reference “685,” to what value does this refer?
Have you spoken to your hematologist about what values would necessitate further study?

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hsminc | @hsminc | Dec 28, 2024
In reply to @leslie2121 "Agree there is no link established (yet) with any known cause for MGUS, but human nature..." + (show)
@leslie2121

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!

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Your entry was most interesting to me.
I have IgG lambda MGUS.
My free light chains (both kappa and lambda) escalated to very high levels when I was exposed to COVID by our cleaning people. I was asymptomatic but clearly had a case of Covid.
My kappa went to normal within a couple of months but the lambda stayed high.

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1 reply
hsminc | @hsminc | Dec 27, 2024
In reply to @nboulet "I have had MGUS for 20 years, I was diagnosed at the age of around 45..." + (show)
@nboulet

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.

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I might add that I have also had MGUS for more than 20 years. I was diagnosed in 2002 with an “abnormal paraprotein.” I suspect that I had this earlier.
While my numbers have risen over the years and I have some “risky” features like a father with SMM, I still am not in a class of either SMM or MM.
Also a website called SparkCures may have some clinical trials of interest.

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hsminc | @hsminc | Dec 27, 2024
In reply to @nboulet "I have had MGUS for 20 years, I was diagnosed at the age of around 45..." + (show)
@nboulet

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.

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What number increased to 685? We are not doctors but maybe we can refer you to helpful websites and information.

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nboulet | @nboulet | Dec 27, 2024

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.

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3 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 26, 2024
In reply to @kk1221 "Hi Colleen! Thank you so much for the welcome and the links to look at. It’s..." + (show)
@kk1221

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

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Mayo Clinic currently lists 10 clinical trials related to MGUS. Some are no longer recruiting participants.
- Monoclonal Gammopathy of Undetermined Significance (MGUS) trials https://www.mayo.edu/research/clinical-trials/diseases-conditions/monoclonal-gammopathy-of-undetermined-significance-(mgus)

You can also contact a research coordinator to inquire about available clinical trials for which you might be eligible. Here's the contact info.
Cancer-related clinical studies questions
https://www.mayo.edu/research/clinical-trials
Phone: 855-776-0015 (toll-free)

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