Does anyone else have MGUS?

@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.

@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 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.

@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 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!

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🧁

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🧁

My PCP gave me a referral to one. Have you asked your doctor for one?

@ravenh , would you mind sharing the name/brand of collegen your taking. There are many...one I hear alot about is from a Christian dr, think it's Ancient grains...very pricey. Hes always on PBS Christian Station...