Does anyone else have MGUS?

I'm not sure what "M spike" refers to.

If it's what I think it is, mine has fluctuated between 1.4 (4 years ago) to an average of 1.7 but the last one was 2.1

I'm hoping a hematologist can make sense of this, because I don't think my neurologist is the right guy for this.

@canadabob. M SPIKE is an abnormal protein present in blood. You can Google it for more info. I do believe there's range whether treatment or not is needed.
I'm sure your hematologist should explain more to you. Hopefully your Dr has a good background in MGUS and Myeloma.

Hi @canadabob. This informational article from verywellhealth.com may help give you a better understanding of MGUS and why the M protein plays a significant role in this blood/bone marrow disorder.
https://www.verywellhealth.com/monoclonal-gammopathy-of-undetermined-significance-4771132
Long term, a hematologist would be a more appropriate specialist for you if there is any progression of your MGUS.
A hematologist is a doctor who specializes in researching, diagnosing, treating, and preventing blood disorders. It might be time to add a new doctor to your team, what do you think?

Thanks Lori, the referral to a Hematologist is in the works.

Just waiting for an appointment. I'm in Canada, so it could be a while.

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.

@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

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.

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.

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

@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