Does anyone else have MGUS?

Hi Debra @oldladydebra1 , welcome to the forum. There are many people living with MGUS here and a few who have progressed to smoldering Multiple Myeloma or Multiple Myeloma. There is a lot of information out there when you Google MGUS. How was your condition diagnosed?
I think most of us scrambled around looking for answers related to the disorder and what we could expect. The truth is that there are so many variables that my story will be different than yours. Yours will be different from the next person. Although it’s theoretically symptom free, MGUS affects different people in different ways. I have developed neuropathy in my feet for instance.
I suspect that you will get blood work done at regular intervals. I get mine every three to six months. The results take a while to learn to interpret to know what to look out for. I rely heavily on my hematologist/oncologist to interpret these for me.
The bad news is you have MGUS. The good news is that MGUS is not cancer and for most of us, the threat of it advancing to full Multiple Myeloma is small. And also good news, if it does, the treatment options are much improved over what was available previously.
Try to relax. It’s not easy, I know. Write all your questions down and insist that your doctor sit down and answer every one of them. Make sure you have a doctor who is an expert on Multiple Myeloma.
I hope you find this forum useful. There is great support here and excellent members.

Wishing you the best possible outcome. Patty

@oldladydebra1 Welcome to Mayo Clinic Connect! I see you also posted to an existing discussion thread "Does anyone else have MGUS? https://connect.mayoclinic.org/discussion/mgus-diagnosis/

I'll see you over there to answer you!
Ginger

@oldladydebra1 And here we are, in the existing conversation thread. As you read the reply from @pmm, she is absolutely correct. Your story will not be my story. And my story is not Pam's.

Being diagnosed with MGUS is something to be aware of, but not a reason to stop living. A good hematologist/oncologist will monitor your situation every 3 to six months with blood work. The biggest majority of people do not progress to the next stage of smoldering multiple myeloma or beyond. Good healthy diet habits, moderate exercise, a stress-less approach to life in general, follow any guidelines you feel comfortable with, will all steer you towards being the best you can. If you have other health issues, make sure you are also addressing those!

Let us know the results of the bone scan, okay?
Ginger

I was diagnosed as a result of routine bloodwork showing a spike in my protein levels as compared to previous protein levels. I’ve been doing research on MGUS and see that one can have this for years, even decades with no progression to cancer or Multiple Myloma . This is certainly reassuring. I have no symptoms and nothing negative has occurred with my body. At 68 years old and with a history of all elderly family members not living past the age of 75, I’ve prepared myself to more than likely pass in my 70’s however, in the hopes of living longer, I have changed my eating and drinking habits. No more Coke Zero. I drink strictly water with fresh lemon juice throughout the day. I eat oatmeal, Greek Yogart, nuts, fruits, chicken, fish and green vegetables. I exercise by dancing for 20 minutes daily. I take a multivitamin daily. I’m hoping these positive changes will keep me healthy and possibly extend my lifespan. I’m not worried about the MGUS diagnosis. I have a strong faith in the Lord and am ready when he calls me home.

I had a bone marrow biopsy maybe a year after I was 1st diagnosed, and let me tell you, it took 2 nurses to push that "probe thing" into my back side of hip bone as my bones were very hard and that was a real painful experience. I'm in my later 60s and the following year the clinic asked me if I wanted to be a bone marrow DONOR.....imagine that! I said , "NOOOO!!!!" and they looked at me like I was crazy, so when I got ready to leave after my 6 month exam/testing, I thought I might slip into the restroom to see if I had "STUPID" tattooed on my forhead!! I am not into EXTREME PAIN, and "if" it wouldn't have been so difficult and PAINFUL, I would have said "YES," to help some other patient live longer, but I compared this to a "spine testing procedure," they call a "Discogram," performed by a spine surgeon, where they Xray guide a needle into a disc in the spine pressure it up and the patient is suppose to tell them when the pain is a 10 (MAXIMUM) and that way they can look at a monitor and see which disc doesn't take much P.S.I., and THAT is the one they concentrate on for "treatment!" Those 2 procedures are my WORSE PAINS I've ever had in 60+ years on this planet!😖🫣😵‍💫

@j2c , I was lucky to have a better experience. I was supposed to have sedation for the bone marrow biopsy but that was canceled because I'd had COVID 9 days earlier and they didn't want to sedate me. I asked for a mild anti-anxiety drug and they gave me a low dose of lorazepam..

In my case, they used a sort of electric drill which probably made the process go quicker. They used a local anesthetic. The sound of the drill was surprising. 😂 It was kind of like going to the dentist but in your pelvic bone. The biggest discomfort was during the two aspirations (I think) but they were pretty quick. If I had to do it again, I'd definitely schedule with anesthesia, but my experience wasn't very traumatic because it went pretty quickly. And the certified nurse who did it was super-competent. I'd even do it again without anesthesia if I needed to, but would prefer sleeping through it.

I was diagnosed 1.5 years ago I have mgrs (kidney involvement) I did 6 months of chemo. I am on maintenance now after my numbers start going back up. Soon I'll be on a monthly shot. Where do you live ? I'm in Boise Idaho. I would love to stay in touch since it's rare and I don't know anyone else with this.

I was also diagnosed with MGUS in 2019. My primary Dr referred me to a kidney Dr who in turn referred me to a Hematology DR due to high protein levels in my urine. I did the whole bone marrow test full skeletal scan. I was seeing my Dr every 3-4 months now its every 6-9 months. And of course, my diabetic Dr and kidney Dr every 3-4 months. And my hematology Dr explained my results to where i understood what was going on, so grateful for him. My progression on my MGUS is very slow numbers barely rising if at that.

Hello, everyone. I've been lurking on this chat group for months now. Diagnosed with MGUS this Summer but finally not too nervous to post myself.
Thanks to @pmm and @gingerw for introducing MGUS every time someone new joined. I appreciated those links ... many times.
I've been a little obsessed with the diagnosis: researching and researching and researching. I think it's time for me to just sit and wait, something I've never been good at.
I have IGG lambda with stable M-Spike but both FLCs increased since last test. So I asked for another round of testing in 6 months (dr wanted to wait 2-3 years!) and a consultation with a Hematologist.
Anyway, thanks for sharing your stories, worries, fears and pain ole anger. All of it was appreciated.
Cheers!

@mikxtr ! Welcome! So glad you chimed in. I’m also glad you are asking for more timely appointments and a referral to a hematologist.
It’s unsettling to get the diagnosis and watching and waiting is frustrating, I agree.
I look forward to hearing about your experience with your new specialist. Do let us know how it goes.
Patty