Does anyone else have MGUS?

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?

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 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.

@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.

@sunsetchris As @pmm Patty mentioned, MGUS usually is asymptomatic, so our doctors take a more laid back approach to it all. The greatest percentage of MGUS patients do not progress further to SMM [smoldering multiple myeloma]. It was explained to me that treating someone right away can create an issue down the line, as the patient is then on a very long road of treatment and it can become a situation of overdoing it.

When you have confidence in your hematologist oncologist, talk with them, discuss your own particular situation and what it means to you.
Ginger