Does anyone else have MGUS?

You have to have trust in your treatment efficacy so I’m glad you kept looking for a doc you feel good about.
I like my local HEM/ONC guy but if I ever question his diligence I would go to Mayo or MD Anderson. I’m 70 but hope to have some good years left to spend with my family and do a little travel.
I love the humor in this thread. This is harsh having MGUS lurking like a mugger in the back of your mind. If you allow it to dominate your thoughts it impacts your ability to enjoy each day. I try to laugh as much as possible. Well done!

I have just been diagnosed, although no one is excited at this point. I had 14 lymph glands removed in 1968 and had a low Red Cell Count all my life. No radiation, chemo etc. Believe it or not I will be 92 in March. I have been told to come back in 6 months and not to be concerned???
Georgina

@gina5009 Welcome to Mayo Clinic Connect! As you read through the posts here, you will discover that the majority of us are told the same thing you have been told. It is a "watch and wait" situation. And, we learn to not let this diagnosis be a big stumbling block to living our best life. Patients often go many years with no progression to another level, and quarterly or semi-annual bloodwork is done for the monitoring.
Ginger

Welcome Gina, it does seem odd to watch and wait but as Ginger noted, that’s what we do. Your Oncologist/hematologist will draw blood every 3 to 6 months and compare the results with your previous draws. If there is a change in the trajectory there will be a discussion about treatment.
I was anxious at first, but I find that only makes me feel bad so I have learned to chill and trust the process. I was diagnosed about two years ago and my numbers are pretty stable. Statistically, very few people with MGUS progress to smoldering or full Multiple Myeloma.
I try to keep my glass half full instead of half empty and focus on the good news that every three months I get a full check-up of the blood that keeps me going.
Hang in there. Live each day.
Patty

Thank you for taking the time to reply to me. I am an old had at this wait and watch. I was diagnosed at 36 with breast cancer and had a total mastectomy. I had a Dermatofibrosarcoma in 1986 and I am now 92 years old, so the waiting and watching has been going on all my life. I have come to the conclusion, I am not going to leave this world until God is ready for me, so I enjoy each day and look forward to the next. Hope all is well with you and God love you
Georgina

I also have been just diagnosed with MGUS, but I will be 92 in March. I have gone this round with Breast Cancer at 36, and Dermatofibrosarcoma at 56. For me, this is just one more wait and see. No one seems very excited at this point, and it has just become one more thing I have to watch. My suggestion is to go on with your life, and try not to worry too much about something that has not happened as yet, and may never happen. I have been told, I may never see anything different, and I do not know how long I have had this. It was found, only because I suddenly developed Trigeminal Neuralgia and had some testing for that. Life is good, enjoy, don.'t let this diagnosis take over your life

I too have been recently diagnosed with MGUS. It was found when I was being tested for PMR (Polymyalgia Rheumatica). I was told by my Dr. that with MGUS, there are no symptoms, but instead they monitor you for progression. I can stay in the MGUS stage for years or it could progress. They don’t know which way it will go. So we will watch it, it is out of my control and I will try and live my life to the fullest. I will try and exercise each day, eat right, get as much good sleep as possible and handle stress appropriately.

Dr. Google is NOT the place to look things up. It can lead you down a rabbit hole. My advice is to just listen to trusted medical professionals. I doctor at Mayo who are experts in the field of MGUS, multiple myeloma, smouldering myeloma.

Ask questions and keep asking questions until you feel you understand the answers. That is what you medical team is there for.

I was just diagnosed also. Very confused about the whole thing...

Greetings! It is all very confusing at first. I had so many questions and made a list. I think I vexed my poor oncologist/hematologist. MGUS is a wait and see thing for most of us. I predict that you will get blood work done every 3 to 6 months and your physician will monitor to see if anything progresses.
Did your doctor talk to you about what the plan is to monitor your health?
I was diagnosed almost 2 years ago and go in for bloodwork every three months. Today, as a matter of fact, I’m going in for my quarterly bloodwork and a CT scan to check to ensure that I have no lesions developing on my bones. That would be a red flag for progression. I feel great, and I am not worried. I am asymptomatic. I also have type two diabetes which is well controlled, and there is some neuropathy that accompanies that as well.
On those days when my cup is half empty, I am mad because I have this additional worry but most days, when my glass is definitely have full, I am grateful for the scrutiny that my health gets because of the MGUS. If anything does become a problem treatment will start early.
I’m 70 and active. I want more quality time with my family and to knock a few hundred things off my bucket list.
Don’t let this diagnosis rob you of anything due to anxiety. Ask lots of questions. Make sure you have a good hematologist/oncologist who takes time to explain things and then live your life.
Patty

Hi @kitkat1070 Welcome to Mayo Clinic Connect where you’ll find you’re not alone in this new diagnosis of MGUS.
I just wanted to make sure you see this very informative and comforting reply by @pmm who is sharing her experience with MGUS here: https://connect.mayoclinic.org/comment/812816/

How was your diagnosis discovered? Was this through a routine physical or were you having symptoms?