Does anyone else have MGUS?

I was just diagnosed with it and am very anxious. I don’t fully understand all the parts of it.

I've had MGUS for 8 years so far. MGUS represents precancerous plasma cells, but only a 1%/year risk of them progressing to SMM or MM. No symptoms so there is no treatment other than monitoring bloodwork. I avoid stress, eat healthy, exercise, and take bioavailable curcumin (a supplement) just in case it helps with decreasing inflammation and TNF. It does hit one, being susceptible to MM or any other cancer, but it only morphs into MM for a small percentage of people. NIH and ResearchGate have a lot of peer-reviewed papers on MGUS (useful if you have insomnia, snooze worthy). A lot of us on this site have had MGUS for years. It can be scary, but also a chance to evaluate if one needs to make other changes or risks in life.

@amyboylan1
I think that response is perfectly normal. Keeping active and trying to minimize stress are good as well as healthy diet and exercise… All the things we should be doing anyway.
I’m sure some members have some things that work for them that they will add to that list.
Just make sure that your doctors stay on top of things. A little gentle nagging, asking questions and reminding them of your healthcare needs will go along way. Sometimes it’s the squeaky wheel.
I’m so glad that you found us and I hope that you will let me know how things are going.

@amyboylan1 It's natural to be apprehensive when we get a diagnosis like this. There are a lot of horror stories that are easy to find! Don't listen to them, is my best advice. As @pmm has said, each of us is an individual, and we will respond to this diagnosis in our own unique way.

I am one of the overachievers, morphing from MGUS to SMM [smoldering multiple myeloma] within a year of diagnosis, then advancing to active multiple myeloma within a year from that. But believe me, that is super highly unusual, even according to my seasoned medical team. For the highest percentage of us who start out with MGUS, that is where we remain. As you have read, maintaining a healthy lifestyle, exercising moderately, minimizing stress all will help overall. Advocate for yourself, become educated from reliable sources [International Myeloma Foundation myeloma.org is a wonderful site!] and stay positive.

We are here to support each other, and share our strengths.
Ginger

Thanks!

Thanks so much. I wanted to take the Curcumin. Have been taking turmeric. Could you tell me where you get the curcumin. I’d really appreciate it. Thanks for responding to me.

No one really knows what is going on.
There is so much we have yet to learn about MGUS.
Thankfully, as more research is done and information is collected, there are more conditions related to MGUS and free light chains about which hematologists are aware.
I am pleased to see over the last decade since my own MGUS dx recognition of potential renal involvement, neuropathic complications, and susceptibility to infection. Of course these conditions do not affect the majority with this plasma disorder but they can be present or develop.
More often I am hearing about these possibilities along with the statement that MGUS is benign and needs to be monitored through SPE lab work, rather than MGUS is “just” a benign condition commonly found in almost 4% of the population and rarely develops into anything malignant.
This has been affirming for me personally as I was in my early forties when Dx and I have experience the progression of peripheral neuropathy.
When even the neurologist insists that these two things are NOT related, I have felt frustrated.
My hope is that research and a knowledge base will grow and that awareness of connections to systemic problems we may experience in our bodies will be acknowledge and eventually even treated!

Turmeric and curcumin have very poor absorption in the GI tract. Absorption is increased by taking curcumin with black pepper (which contains piperine), or slightly modifying the curcumin to make it more bioavailable for absorption (for example, a fat molecule is linked to the curcumin). I use 2 gm/day of Qunol bioavailable curcumin, but there are other brands. For some, there are side effects so it is good to check with a doctor/pharmacist before taking any supplements. https://pubs.acs.org/doi/10.1021/acsomega.2c07326 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10061533/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10061533/

It is definitely more likely that one will die with MGUS as a benign and asymptomatic condition in the blood plasma.
However, those with a dx that comes earlier, in middle age, may need to remind physicians that chances of progression of neuropathies, amyloidosis, renal involvement, and even malignancies are a bit greater as the years accumulate.
Personally, I lost the one doctor who really looked out for my well being more than the others. I have since experienced a lot of dismissal regarding my MGUS Dx. Recently a neurologist told me there is no connection between MGUS and the peripheral neuropathies I experience (he Dx me with fibromyalgia in a new patient visit). One oncologist even said he thought I had been “over monitored” and suggested I follow up with another serum protein electrophoresis in three years. I thought that might be erring on the neglectful side of things and sought another opinion.
The next hematologist actually ordered testing for amyloidosis and this has been discovered in my bone marrow sample.
Being aware of our symptoms and advocating for self is crucial for good care.
I may find this exhausting and I do not like having to seek second opinions or being judged by physicians and considered a hypochondriac.
However, knowledge is power. Without information about our bodies and their current state we will not have access to proper treatment.
It’s difficult to be in a healthcare situation in which I may be the expert in some regard.
In terms of intuition and the experience of symptoms, we are the experts and must communicate in order to be heard.
I am finding that I must try again and again in different settings until I am certain that I have been heard.
If I had given up in my frustration and because I was delayed by six months of infections and fevers, I would not have arrived at a place now providing the monitoring, help, and treatment my body needs.
My hope is that the doctors who dismissed my concerns over the last year or two in clinic will continue to encounter information about MGUS and the small percentage of patients who are symptomatic. The condition may be benign, but may also pose danger to overall health and well being.

The shock is pretty normal, right? It may feel particularly worrisome when the diagnosis is something about which you know little or perhaps had never heard about before.
When the diagnosis comes about through normal blood work, rather than a search precipitated by concerning symptoms, it is good to remember that you might have gone the rest of your life without knowing the Monoclonal Gammopathy was even there. Most persons with this plasma cell condition will die with it but not from complications arising from it.
The related malignancies are rare.
It sounds like you are receiving all the first line diagnostic testing!
The bone marrow biopsy will give an accurate count of abnormal cell growth and a skeletal survey of
x-rays will reveal anything warranting concern or treatment.
Once these are done, it’s a simple matter of monitoring blood work at whatever interval of time your doctor recommends. This ensures any progression is spotted in a timely fashion.
It sounds like you have attentive and thorough care, which is excellent.
I wish you well through this time of waiting for results and digesting the facts of this new discovery.
As others have mentioned, the MGUS is not likely to affect you or your lifestyle in any way.
The same positive choices that increase overall wellbeing will be good for this condition as well.

If you, or others, are looking for movement plans or mindfulness and meditation practices to add to your healthy living routines, the Mayo Clinic has produced many resources to educate and encourage exercise, stress management, and healthful eating. Books, pamphlets, and video lessons are clear and based on research, of course.
The University of Minnesota’s Earl E. Bakken Center for Spirituality and Wellness has much to offer as well. One can visit the website and find access to many online programs and lots of reading. Anyone can sign up for free “Mindful Mondays” programs offered via zoom from 12pm-1 each week.
Recordings are available to stream anytime as well.
Sometimes a diagnosis motivates us to make little changes and develop new helpful habits that over time really improve our health.
This can bring about positive change, affecting us in great ways, arising from something very uncomfortable and scary in the beginning.

-wishing all of you well, today and always!
Take good care of yourselves!