Does anyone else have MGUS?

@sunsetchris
I don’t think that it is common for physicians to be dismissive about MGUS. It is considered to be a benign condition with a few if any side effects. It is a precursor condition to more serious blood cancers. Because the rate of progression is so small, it is not something that is treated until there is a threshold of concern that is met, which is a measured response to blood analysis.
Personally, with complete blood analysis and scans on a regular basis, I get better preventative medical care than anyone I know. If there are signs of progression, there will be a measured treatment response which will be appropriate in accordance with the type and level of risk associated with the threat.
I think it’s important to have these discussions with your physician. If you are feeling concerned because you don’t believe that the medical response is aggressive enough, that’s a discussion that is best had with your physician. You can also ask for a second opinion.

I have high-risk MGUS / SMM. I have posted here a couple of times, including details of my own condition. I certainly understand concern/anxiety over the future on the part of anyone with this diagnosis, because I have it too. However, a layperson support forum is simply the wrong place to seek answers to questions such as the significance of a fluctuating M-spike. People here can reassure (as I have) that, for example, a BMB need not be a traumatic experience. But this is a complex condition, the medical understanding of which is incomplete and constantly evolving. Medical questions must go to your physician. If you don't have a hematologist/oncologist, get one. If you already have one and are not satisfied with the treatment/advice/service you're getting, find another. That's the best medical advice available here.

Can anyone tell me why I have an M spike every two years since 2019. Each time it gets higher . Not yet outlandish. At 3 now. When it is not there I am told I do not have MGUS anymore. Then 6 months later it is back at a higher level. I do not get it. I do have neuropathy but not bad. This all started with a fall and a fractured hip plus replacement last year. Could it be that now that the hip is back to normal it just goes away?

Thanks

I do and am amazed by the liaise faire response from MD. NO treatment just annual blood test. Also the Blood results at times do not show the M spike. And then they do. This is going on since 2019. That was first appearance. Then it disappears only to return with a higher M spike two years later. Very frustrating as no one takes this seriously. where to go and what to do?

Healthy64.
The best part of your story is what hospital you are at and you advocating for yourself. I was diagnosed with MDS in Early October 2023. I had a bone marrow transplant in April of 2024. My Hematologist is a funky fellow. I enjoy talking with his PA and asking her more questions. I will say they listen and take action on everything i say is trouble. She listens and lets him know.
Postings are slow this weekend. I know if you go in the search box at the top of the page and look for MGUS. There are many posts.
Glad you found Mayo Connect.

Hello everyone, I am new to the group. I was also told that I have MGUS in 2024. Had a skin biopsy in March 2024. They took a piece right up above my ankle and my outer thigh right before my knee.
I had been complaining about muscle weakness for pretty much about a year.This test was ordered by my Neurologist.
Took about 5 weeks for the results had to be sent to John Hopkins.
The results stated that I have small fiber neuropathy/ which is peripheral.
The symptoms I experience is numbness in hands at night. And the hand brace helped for some months in the beginning but now my hand will still go numb with the brace on.I get tingling around the ankle, and coolness on the top of my thighs.It has eased up some from when it started. I try to be consistent with exercising, drinking plenty of water, and I have done a deeper dive with into my diet. My left foot goes numb on the pad of foot. That’s been going on since 2022. That’s really how I started going to the neurologist. They thought it might be a pinch nerve.
When my primary doctor did CMP test it came back abnormal protein in my urine.
I was referred to hematologist immediately. I like my Primary Care Doctor.
So, that how all of this got started a year ago this month.
I currently seeing the hematologist every 6 months now. This has truly been a roller coaster to digest all of what I had going on 2024.
Thanks for the informations shared.
Kind regards, Healthy @64

@buckett
Interesting questions. I believe that neuropathy is an established connection with MGUS. You see it mentioned as a side effect a lot in the discussions. I am unsteady on my feet and I’ve had neuropathy for several years now. Prior to my diagnosis, I mentioned this to my PCP but because of my advanced age 😏 I find that much of what I complain about is attributed to age.
I’m afraid I am somewhat of an expert in the evening, munchy category, but I try to stick to unbuttered popcorn.

The loss of the Y chromosome in males is a hot topic among geneticist. Why is it happening in males as they age and does it have any relationship to the increased incidence of cancer and heart disease in males versus females? Google: “Y loss and implications for Oncology”In my case, LOY (loss of Y chromosome) being only 20% of plasma cells tested from BMB, without clonal expansion suggests old age phenomenon. The good is now I have a baseline that can be monitored if my MGUS labs go up.
My road to MGUS started out with an echocardiogram showing the asymmetrical, hypertrophic heart wall. Then when the blood lab showed IgG lambda 0.99 g/dl and other oral history issues (neuropathy, tendon issues, etc) amyloidosis became the main concern. Thus the battery of tests.
MGUS for me is, “well this is interesting, I wonder where this will take me?” I will track it closely and plan to live life to the fullest. My next step is to explore if I have MGNS, Monoclonal Gammopathy of Neurological Significance. The reasoning being is the neuropathy, slight balance issues, and the “weird in the head” feeling. I am trying to change my diet and started the turmeric.
Any help in how to control the nighttime/evening munchies after dinner would be greatly appreciated.
Thanks!

Hi, I had a bone marrow test done to determine if I too had MGUS. The bloodwork had already determined that much. My plasma count was at 5.0%. I am 57y/o.

@buckett
“Have any other males out there on this forum with MGUS seen this if cytogenetic testing of a bone marrow biopsy was done?”
Can’t help you there, but I’m struck by all the information you received. It’s a lot to process. Good news on the amyloidosis.
Do you believe that you have all the information you need about MGUS? I’ll poke around the posts and see if I can identify some folks that might be able to address the cytogenetic testing of their bone marrow biopsy.