Should I be worried about my MGUS diagnosis and my M Spike rising?

I’d be repeating those labs every 3-4 months. Sounds like you haven’t had a bone marrow biopsy. Follow the news that comes out of ASH this weekend, go to myeloma.org the website of the International Myeloma Foundation. Look for ASH23.
Sorry, I’m not a doctor, but I’m a pretty well educated patient.

I would try not to worry too much. Those labs are good for MGUS. I would make sure to get new labs every 3 to 6 months. Remember that MGUS doesn’t cause symptoms so if you’re still feeling unwell continue to pursue answers from doctors as to what is wrong with you. p.s. I have higher risk MGUS and have researched the heck out of it.

@rhody89 Good morning, and welcome to Mayo Clinic Connect! It can be pretty scary to hear news like this, isn't it?

As you have already read in the posts from @barbdk and @jewelina, keeping on top of things is critical. But don't dwell on it, please. People can go for many years with no further advancement of disease. Regular monitoring will allow you and your medical team to watch for trends and changes. Keeping up a good healthy diet, minimizing stress, and getting moderate exercise all will go a long way towards helping you maintain your best quality of life. Be aware of your condition, but do not dwell on it.

Do you have any questions for me?
Ginger

I’m 50, was Dx’d with MGUS just over 2 years ago via BMB just under smouldering (IgG Lambda, low IgA).
What I recommend is learning about what the sub-type is that you have, then know any specific potential issues that are unique to it.
I developed kidney disease over the last 8-9 months (that I’ve known of), after being on the list to be a live kidney donor (perfect kidneys before MGUS).
I’m still symptomatic: fevers, drenching night sweats, peripheral neuropathy, brain inflammation (MRI), bony nodules growing on my pelvis, bone thickening and hardening (change in density), anaemia, high serum calcium (not supplementing or eating calcium foods), lung/kidney/heart changes, frequent infection, etc. I found educating myself about the parallel issues (like paraneoplastic syndromes) that can occur alongside MGUS means that I can report symptoms, knowing they may be of some significance. I also had increasing serum paraproteins since Dx, and now they’re just under smouldering. However in this instance I’m not so concerned about the cancer cells and resultant paraproteins per se, I’m worried about other associated syndromes that can be serious. For instance, the progressive loss of sensation in my arms and legs is progressing and I’m becoming weaker by the week. So, the ‘side issue’ that I may have (what the immunologist and haematologist are looking for) is something called POEMS, alongside CVID.
So in my case, yes, MGUS, but also yes, to some associated tissue damage disorder that has associations with MGUS (technically at the moment it’s classified as MGRS, R for renal significance due to progressing kidney failure eGFR has been low 40’s lately).
So it’s worth learning about what you have, what type, and what can be associated with that type, for future reference and to recognise symptoms that may need further attention.
If I just went with the ‘head in the sand’ approach, I wouldn’t have been able to pinpoint specific abnormalities beyond ‘MGUS is asymptomatic and nothing to worry about, so you don’t need to understand it/you’re only going to cause yourself to ‘worry’ unnecessarily’ mantra.
Knowing what you have, how it works, what to recognise, and what needs to be tested/what happens next is practical and logical, and counters any ‘worry’ because you know your condition and what it is capable of. Then you can kick back and periodically monitor, knowing what’s ‘normal’ for you and your situation/sub-type, and what’s not.
I found learning about all the tests that is done, along with normal ranges, helped. Then I researched scholarly articles on my sub-type (research papers of significant quality and recency) and reviewed the findings against recommendations (which vary depending on who they are from, and in particular that didn’t include some of my symptomatology, so were less accurate predictors of course of progression in my case).
Good luck, and remember that statistics are only that, and they do not speak for individual cases, nor are they set in stone, but merely a guide (former teacher, and 9 years of health science study at uni) 🙂

@rhody89 welcome to the forum. I can certainly echo the recommendations that have been voiced here. Frequent lab analysis…every three months for me until six months ago my hematologist/oncologist suggested we could go 6 months. I go in for labs and CT today as a matter of fact. We do a CT with contrast annually to check for bone lesions. So far, so good. Some do bone biopsy but I have opted to wait on that as my numbers are relatively stable.
You’ll note that there is great variation on the question of whether MGUS is totally benign. Many who post here attribute neuropathy and other symptoms to MGUS. The one thing that is generally agreed upon is that MGUS is not cancer, although it sometimes advances to cancer. So in that respect it is benign.
I think it is rare for a newly diagnosed person to feel no concern or even panic at first. As months, years and even decades for most roll by, it becomes a peripheral annoyance for which we receive the benefit of excellent medical care. Hopefully that will be the trajectory of your journey.
It sounds like you have found a provider in whom you have confidence. Ask lots of questions, live healthy and enjoy your life. Should your MGUS progress, they know how to treat it. There has been great advancement in treatment strategies in just the last decade. Your doctor can talk to you about that if you are so inclined to ask the question.
This forum provides excellent information and peer support. I’m glad you found it.

Patty

I have been diagnosed with mgus but don't fully understand what it is all about

Hello Marie, @honeybeemarie
It is confusing. At least it was for me. I’m so glad you found this group. Here is a Mayo Clinic article on MGUS that was helpful.
https://www.mayoclinic.org/diseases-conditions/mgus/symptoms-causes/syc-20352362
I think the best resource for information is a real comprehensive chat with your physician. There are a couple of questions I have. How are you diagnosed with MGUS and by whom? For most of us who are diagnosed, the M protein in our blood was found accidentally when they were looking for something else. That means it’s usually not a hematologist/oncologist who gives the initial diagnosis. So if it’s your PCP, you will likely get a referral to a hematologist/oncologist. For me, the most important thing was to find one that I felt comfortable with. I wanted someone with a lot of experience in treating multiple myeloma and what sometimes turns out to be precursor conditions of MGUS or smoldering multiple myeloma. I also wanted someone who was patient with my questions, made sure that I had all the information that I needed to make informed decisions and was available to me by phone or appointment within a reasonable period of time.
Almost always, with MGUS, it is a monitor and wait regimen. MGUS is not cancer. In fact, the odds of it becoming cancer are in our favor. Your physician will have you come in for blood draws on a regular basis to check to make sure that your MGUS is not progressing. My physician orders bloodwork every 6 months now since my “numbers” are stable. Annually he orders a CT to scan my bones for bone lesions. Some do a 24 hour urinalysis. Your doc may order a bone biopsy. All of this is to ensure that there is not progression that goes unnoticed. Downside is that it’s natural to feel anxious about this new wrench in the works. Upside is that you get excellent medical care.
Try not to be anxious. Schedule a time to talk to your doctor either on the phone or better yet, in person. Write down your questions and make sure that they are all answered. Ask for referrals for a hematologist/oncologist and ask friends and others who may have experience with these specialists. You want to find one that meets your requirements. Stress is an enemy. Don’t let it debilitate you. I try to eat well, sleep well, and stay in the game. We travel, have fun with friends and family and embrace life. Carpe Diem, y’all.
Again, welcome to the forum. There are lots of good people here with great mentors. I always learn from the experiences of others.
Have a good weekend.
Patty

Check out Waldenstrom. Related to high protein M spike.

Hi patty thanks for getting back they did routine blood test on me they were looking for something else but they found mgus instead I have to go in January for a check as well I have a lot of back pain though which kills me sometimes though

Make sure you get the care you need. Patty