Does anyone else have MGUS?

@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 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!😖🫣😵‍💫

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.

@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

@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

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

I was just diagnosed with MGUS. I’m reading there is no treatment and many can live with it for decades however, it can also progress to blood/bone cancer. I had a bone scan today and will await the results. Did you have a bone scan? I have no symptoms. It was found during routine bloodwork. What has been your experience thus far? What is your Doctor telling you?

I was just diagnosed with Monocolonol Gammathopy. I’m reading there is no treatment however, can progress to blood cancer and affect the bones, Multiple Myloma. When were you diagnosed and has there been any adverse progressions? I had a bone scan today and will wait for the results.

I was just diagnosed with Monoclonal Gammathopy due to increased protein levels in bloodwork. I’ve researched this and am reading there is no treatment however, it can progress to blood cancer. Anyone who has or had this have it progress to cancer?

I, too live in the northern parts of U.S., and a small town and nature is my favorite place to be to heal and soothe what ails me...well, almost! My feet are very important, and neuropathy sure set me back but I try to stay active, summer or winter and fishing, hunting, wildlife viewing, hiking, exploring new scenic places is a great medicine, and has "zero side affects!"😉 I am so glad to have found this site/forum to read and correspond with others who have some symptoms like I do. I can read some of these symptoms and struggles and realize, I'm not in too bad of health condition for a 65+ of age person. I have friends who are much younger and have far worse health than me. One friend told me, when he wakes up every morning, the medicine he takes, and he said it looks like a "bowl of cereal!" I wanted to laugh, but my heart wouldn't let me! Hope we ALL find a solution to our health problems and can live and ENJOY our ONLY life till the clock quits ticking!!