Does anyone else have MGUS?

I am on it as we speak. Hopefully, will find one close to me.

I was just diagnosed with MGUS and I don't know what to expect. I NEVER heard of MGUS! I don't go back to the doctor until March. I'm trying not to worry too much.

Thank you

Now you just wait to repeat the test. It’s about 1 or 2 will be positive out of 100. That’s what I read. I was also recently diagnosed with it. I go back in February for re-check. Every 6 months. I would just say relax. There is not more we can do. If there was something we could do to prevent it, that’s one thing but there isn’t.

Welcome to Connect, @ilovebirbs It’s really scary getting a new diagnosis out of the blue and having no clue what it’s all about. There are a number of members in our forum who also have developed the condition referred to as MGUS which stands for Monoclonal Gammopathy of Undetermined significance which is a real mouthful to remember.

Basically, it’s a condition in which there’s evidence of an abnormal protein found in your blood called M Protein. It’s often very slow to develop and some people never need to worry about treatment. However, over time if there is too much of the M protein in the blood, it can cause some damage in the body. So that’s why your doctor will monitor your blood work on a routine schedule. Usually it’s referred to as watch and wait, or active surveillance. Your doctor will look for trends in your blood results to determine if and when there would need to be treatment started.
To give you a little more information, there are 2 ‘go-to’ articles I like to cite for new members because they give a good overall explanation about MGUS, what to expect and potential treatments.

~From Verywellhealth.com
https://www.verywellhealth.com/monoclonal-gammopathy-of-undetermined-significance-4771132

~From healthline.com https://www.healthline.com/health/how-serious-is-mgus

There are also several members with MGUS in related discussions. I’d like to introduce you to @mjlandin, @gingerw @ @allstaedt57 @fayeraye @mgrspixi25 @sjgray and many others in this conversation about MGUS

Does Anyone Else Have MGUS?
https://connect.mayoclinic.org/discussion/mgus-diagnosis/

The best thing you can do is stay off Dr Google because too much searching often leads us down a rabbit hole of misinformation. I’m sorry your current doctor didn’t give you very much information but you’ll find you’re not alone with the new family you just gained here in Connect.

One suggestion that you may want to consider is getting a referral to a hematologist who specializes in blood disorders if you haven’t already.
Were you having any symptoms that lead to the diagnosis or was this found randomly with your annual physical?

Good morning!
I am going to vote with the majority here and advocate for a specialist. PCP’s read about MGUS in their training but it’s not as juicy a diagnosis as something that requires surgical or chemical intervention, I suspect. Watch and wait isn’t all that exciting for them.
For us it’s good news. They watch our numbers carefully, drawing blood quarterly, semi-annually or even annually. No treatment unless you meet the treatment threshold. Yay!
BUT the physician examining those numbers needs to be the best-trained, most experienced doctor you can find. I don’t know where you are and what’s available in your area but for me, I asked lots of questions of physicians friends and patients to find a good match. It’s frustrating because they are also busy. I could not get into my first choice physician, but I asked her who she would see if she were in my shoes and she recommended my current oncologist/hematologist. I have a lot of doctor and nurse friends since I worked in a Children’s Hospital for 15 years as a medical social worker. I definitely had an advantage. Short of that, there may be a multiple myeloma support group online that can help.
Avoid Google and Facebook MGUS pages. There was so much misinformation on Facebook. It nearly made my head explode.
The watch and wait does seem a bit maddening sometimes if I allow myself to think about it but I am about three years out from my MGUS diagnosis and it is easier all the time for me to just go about my life and not worry. You have to remember that the statistics are on your side for no progression to smoldering or multiple myeloma. Keep your glass, half full and not half empty.
I’m delighted that you found this group and I hope that you come back and let us know how things are going for you on your journey.
Patty

Greetings! Oh, I remember those early days after I was diagnosed so well. As though they were yesterday. All that reading I did on Google that scared me to death. I strongly recommend avoiding Dr. Google. Dr. Google is a glass half empty kind of gal.
I think they do read about MGUS in a med school but it’s really not all that fun for them. Nothing to remove surgically and no course of treatment except for watch and wait. A generalist won’t know much about it.

Once I finally got into a oncologist/hematologist I was able to ask all my questions. I made a very long list and typed it out and took a hard copy in with me to see him for the first time. As I asked my questions I checked them off my list, making little notes because you leave the office and you wonder “what the heck did he say about that?“ There is so much information to absorb and it seems rather complicated. It’s all pretty well-defined however. It’s like a bingo game and the numbers on your bloodwork will be evaluated, and if they reach a certain threshold and configuration, your specialist will discuss treatment. It’s unlikely that this will happen to you. It’s statistically improbable. I imagine most people with MGUS die of something else and don’t even know they had it. I often wonder if it is a blessing or a curse to know that you have it because it’s an additional worry, but I think ultimately, I’m glad that I know. For one thing, I get the best medical care of anyone I know because I go in for bloodwork Every 3 to 6 months. I say 3 to 6 because I just recently have “graduated” from every three months and have not yet had my first “six month” appointment.
At the point that I would require intervention, I would opt for a second opinion. I would go to the Mayo clinic. I hope that never happens. But if it does, I am quite confident that the gains that have been made in the treatment of multiple myeloma over the past decade are life saving.
My biggest hope for you is that you can relax. Anxiety can literally make you feel sick. Trust the science. Find a doctor who is experienced, well trained and takes the time to answer all your questions then live your life. Don’t waste a day worrying about things over which you have no control.
Wishing you all the best on this journey. Check in and let us know how you’re doing. I learn a lot from my fellow pilgrims.
Patty

@pmm Patty, I had the same experience. When I needed to get a specialist, I had my memory kick in. There was a hematologist oncologist who had been an expert witness in a trial I worked. I contacted her office and was able to become her patient. While we did quarterly testing, she graduated me to six months. In hindsight, she felt really bad, because my numbers rose significantly. And I was moving 800 miles away. So, we did comprehensive testing, I had already connected with my current specialist and all records were sent. Two weeks after moving here I was in the new-to-me cancer center, with my current doctor. He has been a godsend in managing my condition.

MGUS does not need to be considered a death sentence, nor a hindrance to living our lives. It gives us the chance to have complete bloodwork more often, and feel comfortable that we are indeed being followed for things. Moderate exercise, good diet, stress-free living all go a long way to making the wheels turn smoothly. And being here on Mayo Clinic Connect to share with others. Nothing better than support from peers!
Ginger

Ginger! That would be awful to start over with a new team. I guess I could do it because I’ve moved around in my adult life but yuck! I’m glad you have someone in whom you have so much confidence.
Yes, resounding yes, here! MGUS is not a death sentence at all. If anything, it has squared my shoulders in the face of my own mortality, and I have embraced life fully. I pay more attention to friends, family, and even those beautiful spiderwebs crafted skillfully by the orb spiders in the fall. Life is good. We shouldn’t miss it.
Hugs.

I was diagnosed with MGUS over ten years ago. I see a hematologist/oncologist once a year. My numbers are fairly stable, and I tend to forget that I even have it between appointments. But I do remember being a little anxious those first few years.

I recently had a bone marrow aspiration to check for myeloma. I found out today that the results came back as MGUS but do not know what type or level (someone will be in contact with me within a few weeks to discuss going forward). I have been doing some research and I keep reading that there aren't any symptoms however I have quite a few symptoms (the reason they decided to do the bone marrow aspiration). I have peripheral neuropathy in arms, hands, legs and feet (really painful in my heels), pain in rib area (front and back), kidney area, elbows and knees. I also feel nauseous a good deal of the time, get some headaches, get frequent day sweats and lose balance 3/4 times a day (don't get dizzy and don't actually fall, only when I am standing still not walking). In my readings it says if you experience specifically bone pain to see your doctor as this has possibly progressed to myeloma, however I have been told I don't have myeloma. I am just wanting to hear from people regarding these sort of symptoms as I can't handle waiting a few weeks to ask my questions and would like to know from people actually going through this.