Does anyone else have MGUS?

@michaelal, thank you for sharing your condition, and im sorry you are dealing with all that.
Honestly, I really thought my complaints would have been addressed right there at mayo, as usual. They could have ordered tests or a neurologist. My guess, is the assistant I saw went entirely by my labs, all stable...so I was dismissed.

dazlin, I have had MGUS for two years now (also have Waldenström's non-Hodgkin's lymphoma) but my neurologist said it would take about 3 years to heal the nerves that are causing my burning, pain, tingling and numbness from my neuropathy after my IgM, and light chains are normal - which is not yet. So, I think it's a waiting game, sorry to say. But everyone is different. Do you have a neurologist who has experience with MGUS, DADS, CIPD neuropath? Most seem to deal with stuff like diabetic neuropathy - which is true of my Neurologist, but he is consulting with a colleague that does (and did my EMGs).

@dazlin I drive over 2 hours each way to my specialist team, and can certainly relate!

Fatigue can have several contributing factors, including the MGUS, and other health concerns all jumbled together. I am on daily dialysis, plus have fibromyalgia,so my myeloma seems to sleeve right into the fatigue factor.

If one test is stating positive for MGUS, you may want to inquire if they truly want you to wait a year?
Ginger

@gingerw , thank you for your helpful reply. Last night I got 2 more results, one saying positive for mgus, flagged it. I'm supposed to go in 1 yr, I'll definitely ask if that will include an examination and let them know I haven't had one. Otherwise, ill do the labs and leave. I've never complained to them for the body/foot aches, but have every time about fatigue that hits me hard. They have
no explanation. I think right now I'm feeling very overwhelmed, I'm sick, probably a flu I caught from my grandson, hes 4 yrs.
I do mammograms there, dermatology, and I see an audiologist also...so the trips take a toll on me. 96 miles one way, and I always get my house and cooking situated the day before. I just like being organized. I see primary dr on the 12th, maybe I'll complain 😏. Will definitely ask him about the painful bump on my foot.
I appreciate your reply...maybe I need a push.

@dazlin Stable numbers are a good thing! An early holiday gift for you, healthwise!

Trends in blood tests are the best way of monitoring our chronic condition, which MGUS is. As you have read here, we often go many years with no advancement of the disease process to smoldering myeloma. Many of us have quarterly tests that eventually stretch out to every six months. You certainly can ask your team at Mayo why there was no physical exam, and listen to their answer. My hematologist oncologist will check my lungs and heart each time, plus lymph nodes, pulse, and legs for swelling.

Ask your primary about the fatigue and foot/leg burning. He may want to have some baseline tests done, or look at what Mayo did. Has Mayo addressed these with you in the past?
Ginger

Brandy @bvz4483, welcome to the Forum. As Ginger suggested, we are all best served by finding a hematologist/oncologist who is very experienced with MGUS and Multiple Myeloma. MGUS is not cancer, but it can morph into cancer. The statistics are on our side that it will not, however. It’s shocking to get the diagnosis and I remember feeling very anxious. Three years out, I am much more relaxed about it. I got blood draws every three months for a couple of years and then “graduated” to every six months seeing my hematologist/oncologist. If your numbers are stable, there is a lot of variation in how often you are seen. I have learned from being on this forum, peoples symptoms are very different and sometimes it’s hard to tell if aches and pains are due to the blood disorder or if there’s something else going on. It forces us to be diligent about our medical care, which is a good thing when you think about it.
I’m glad you found found us, and I look forward to hearing more about your journey.
Patty

I've had it for a few years.... the blood tests vary. each time.. Thursday they went down which is good. I hae infected terth waiting to be extracted. so wonder if this is cause of my mgus. Been getting internal vibrations lately.

I had my visit to Mayo yesterday, and everything is stable. Actually all the markers for mgus are within normal range, and looks like they're not detecting it in my bloodwork. This has been since last year. My kappa/lambda ratio also has returned within normal range. I'm thinking it's gone, if that's possible?? I thought once you have it, it remains for life.
They didn't even give me my Dr....I saw a nurse who basically read back all the results, which I can easily do from my portal. No physical exam either. No explanation for fatigue or foot and leg aches/burning. I'm seriously considering not following up anymore.
I go to my primary in 2 weeks, just usual annual check up...I feel like why bother?? I'm grateful my labs are looking good, and that's all they go by. So no point in complaining about aches and pains. The painful bump above my heel, no explanation either.

@bvz4483 Brandy, welcome to Mayo Clinic Connect. As is typical of chronic health situations, looking at trends rather than individual test results is most beneficial. Are you under the care of a hematologist oncologist, now? If not, I would strongly suggest that you advocate for that. A specialist will have the best information, and your best interest at heart. If you are near a Mayo Clinic campus, that would be ideal, but there are also many large teaching hospitals.

As you are finding out, there are a lot of nuances to MGUS, and not everyone experiences the same things or to the same degree. Regular monitoring of your situation is critical, for peace of mind if nothing else! Here is an existing conversation that is current here on Mayo Clinic Connect: https://connect.mayoclinic.org/discussion/mgus-diagnosis/

Also, the International Myeloma Foundation has a great article discussing the differing types of MGUS and myeloma. Not to be scared, but to be informed! https://www.myeloma.org/what-are-mgus-smm-mm

Any other questions that you have for me?
Ginger

Hello, I am new to all of this. Our doctor informed me three weeks ago that I have MGUS. To give you a brief summary, I am not very confident in my doctor's diagnosis as he only stated that he believes it to be MGUS based on the biopsy results from October 30th, 2023, and my blood work done on September 30th. I asked if there should be a baseline blood panel going forward from the diagnosis date, and he replied, "Yeah, we should probably do that." The results from my recent blood work show that my WBC is elevated and that both my Kappa and Lambda free light chains have gone up since September.

KAPPA FREE LIGHT CHAINS
Nov 28, 2023
2.33mg/dLHigh

Sep 11, 2023
2.26mg/dLHigh

LAMBDA FREE LIGHT CHAINS
Nov 28, 2023
9.1mg/dLHigh

Sep 11, 2023
8.55mg/dLHigh
KAPPA/LAMBDA RATIO
0.26

Should I be concerned at this point? I won't burden you with the long list of physical issues I've had and still have that no one can explain.