Does anyone else have MGUS?

Nothing for Nothing but…I really had no ifra how to STOP the extreme fatigue. I found my cute lol. A really good source Of Collegen peptides. BINGO i could not be happier🧁

Oops, sorry - I forgot the link to the second chunk. It's https://www.mymyelomateam.com/resources/managing-fatigue-and-multiple-myeloma/.

@dazlin, those values do look good. For comparison, my kappa/lambda ratio is 5.64, bone marrow was 5% abnormal kappa plasma cells, no M-spike because I'm kappa-only. So I'm kind of in your neighborhood and have been trying to read about those kinds of values.

You might want to get the 24-hour UPEP/IFE (Bence Jones) test along the way, but it sounds like you've had good monitoring.

I personally feel like there are things related to MGUS that create inflammation (or respond with inflammation) and produce fatigue, where you feel like you're getting the flu a lot of the time. So I went looking for references to MGUS + inflammation. Here are a couple of chunks:

"Concerning inflammation, 14 cytokines were equally increased in MGUS and MM compared to healthy subjects. MM diverged from MGUS by greater concentrations of IL-11, RANTES, hepatocyte growth factor (HGF), and stroma cell-derived factor 1 alpha (SDF-1-α). MGUS and MM subjects exhibiting hyposialylated pc IgGs had considerably greater concentrations of IL-6, IL-17, IL-33, TGF-β1, HGF, and tumor necrosis factor-α compared to subjects with hypersialylated pc IgGs." (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6600674/)

So basically it's saying that people with both MGUS and MM can have notable levels of inflammation.

And this chunk, which is just about MM, but explains cytokines a little:

"When functioning normally, cytokines protect a person’s body, but when cancer is present, cytokines can actually cause cancer cells to grow and spread to other parts of the body. The resulting fatigue from cytokine release is similar to that which people feel when fighting off a virus. With myeloma, the fatigue is more persistent and lasts much longer."

(When they say "cancer", they mean MM, of course.)

At least we know we're not alone!

@nancyworld , I do bloodwork only. I did a bone marrow biopsy a few years ago, which showed 4 percent abnormal cells.
My kappa/lamdra light chains varied between 1.75 to 2.00...they have returned to normal level past year. 1.48 this last test. 1.65 is normal range.
I have not had the Bence Jones (urine) test. M-spike was 0.04, and has not been detected on last bloodwork...2 weeks ago.
I used to do bone scans, checking for lesions, but have not been required to do those anymore.
They feel I have been remained remarkably stable, and will follow up in 1 year.

I should always include a reference here so people have a backup for what I've said. Here's an explanation for the above statements:
https://www.myeloma.org/monoclonal-protein-tests
I omitted to mention QIg because I haven't had it and hadn't seen it in my reading yet. Good thing I just looked it up again!

Besides these labs for screening for, and evaluating, plasma-related abnormal proteins, doctors may also run labs to check organ status, like calcium (for bone health), BNP and troponin (for heart health), eGFR and creatinine (for kidney health), and so on.

@dazlin, for the MGUS labs, were they using serum electrophoresis with immunofixation (SPEP/IFE), 24-hour urine electrophoresis with immununofixation (UPEP/IFE) and serum free light chains (SFLC)? Those three tests are the standard first pass at diagnosing MGUS.

If they did those and you want to share the values or message me personally (can we do that here?), I'm happy to share what I've learned. Of course I can't give medical opinions, but I can share links to articles that are relevant. For instance, there are "stratification" tables published online that list lab values for various levels of risk of progression to MM.

@nancyworld , I did see my primary this past Tuesday. He saw the lump on my foot, and says it's on the bone from calcification. Asked if I injured or fractured my foot. I said no. As for my burning aching feet, sometimes legs if I'm standing too long, he believes it can be back related. He showed me a stretch for my foot to help loosed up the ligament...thats about it. The fatigue I feel, didn't seem to prompt him for any further tests. If my foot becomes more troublesome, I'll book myself a podiatrist. Dr says they'll probably boot it, and thinks that's worse. No explanation and rules out neuropathy....labs from mayo are only showing slight mgus, all else is good....not diabetic either.
So basically, I'm back on my own, doing what I feel is best for me...no one really understands the fatigue I get...literally wiped out. I'm also learning to pace myself, and take breaks. I have a tendency to want to keep going and get a thousand things done in half a day. Thanks for asking...hope you're doing well!

Yes and he gave me one. Then I googled the doctor and he had good ratings. I’ll be seeing him on Dec 26.

Marion Cole, MD | Inova
https://www.inova.org/doctors/marion-e-cole-md

Now having a diagnosis, I just filled out my Bio and will repost here, because it kinda belongs in this thread.

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Bio
Newly diagnosed with MGUS in Dec. 2023. Peripheral neuropathy was the presenting symptom, as I went to get that checked out in the summer of 2023. Also pretty bad fatigue. The only thing that was abnormal in the first few rounds of labs was free light chains. No M-spike. After 3.5 months of more labs, fat aspirate and bone marrow biopsies, I've got basically a kappa LC-MGUS diagnosis with no current way to address the neuropathy and fatigue, and waiting 6 months for blood/urine re-testing.
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I didn't have room in the bio to include all the details, including references from the voluminous (!) online reading I've been doing.

During the past few months of investigation, I was mostly alarmed at the prospect of having AL amyloidosis and most of my reading sought to support or contradict that. The fat pad aspirate and bone marrow were amyloid-free, thankfully, but I'm still left with questions.

The short version is that I'm not confident that my MGUS is an indolent symptom-free age-related and harmless aberration. For one thing, how can doctors and researchers call MGUS "symptom-free" when fatigue and peripheral neuropathy have clearly been associated with it in some people?

I think there's a problem with current definitions. "Symptoms" to watch for in MGUS, lest it become multiple myeloma, include CRAB: elevated [C]alcium, [R]enal failure, [A]nemia, and [B]one pain. Thus neuropathy isn't a "symptom" because it doesn't necessarily indicate progression to MM. What?!

Commonly-accepted vocabulary used for MGUS seems severely lacking in clarity.

Moreover, MGUS may progress to disorders OTHER than MM, such as AL amyloidosis, Waldenström macroglobulinemia, and other funky cell things with funny löng names. What are the CRAB equivalents for those disorders, then?

I know that generally, in MGUS, we watch for increased M-spikes and free light chains. People like me don't HAVE M-spikes, but can at least watch FLC numbers. Other folks have "non-secretory MGUS" and are stuck waiting for signs of heart, kidney, or bone failures, I guess. (Nerve damage doesn't seem to count.)

This just skims the surface of the things I'm concerned about, and I'd love to have some discussion about them.