Does anyone else have MGUS?

Welcome, @whitepine66. Yes, the waiting game is rough. Even if your MGUS develops into MM (or when as your oncologist prepared you for), treatment may still be watch and wait for a time. Enjoy feeling great and continue to do the things that bring you joy. What keeps you busy and brings you joy?

I find every three months pretty reassuring. Have my next batch in July so we’ll see. I’m not a very good watch and wait person generally speaking. So I think six months would cause me some anxiety.

I find that this mind-body connection thing is the real deal. If you are anxious and worried then you’re not going to feel good. Try and keep your head in the game of life and do things you enjoy. It really does make all the difference.
When I get anxious, and I try to remember that people live for a long time with MGUS And most times the diagnosis is made because people are being checked out for something totally unrelated. So you won’t have significant symptoms and you’ll feel good. If I’m going to have something… I feel pretty lucky. This does not have to advance to smoldering multiple myeloma or multiple myeloma. The statistics are reassuring.

@whitepine66 Talk about adding unwanted anxiety into your life, right? As @colleenyoung mentioned, the waiting game is nothing we should be focused on. But, that said, we all do it.

The biggest majority of MGUS patients go for many years with no advancement of their condition. Our bodies are miracles, and the way all those different systems work together is amazing. Keeping a good healthy diet, moderate exercise, and a positive outlook can be keys to achieving the best we can be. Being aware of possibilities but not focusing on them is easier said than done, I know. Been there, done that myself!

Are you satisfied with this doctor? Do you feel you can tell him how his comment made you feel? Ask him where his prediction came from, scientific proof. As a patient, you have the right to explain how his interaction has affected you.
Ginger

I really like my oncologist. I am a former math and science teacher. I enjoy our talks about the chemistry and the statistics. Understanding what is going on with my body is reassuring.

Hi, I’m 49 years old and just got an Mgus diagnosis. I’ve been trying to find out all I can and have so many questions. I’d like to connect with other Mgus people with more experience and knowledge. Thank you!

Hi @mommatracy5 Welcome to Mayo Clinic Connect. Oh gosh, anytime we get a diagnosis it’s always a time of anxiety and questions, isn’t it?
MGUS~Monoclonal gammopathy of undetermined significance (MGUS) is a condition in which an abnormal protein — known as monoclonal protein or M protein — is in your blood.
For most people it doesn’t pose a problem but it can progress into more serious diseases. We have quite a few members in our forum who have also been diagnosed with MGUS. I’m posting several links to discussions on MGUS below, along with Mayo Clinic’s webpage on MGUS.
https://www.mayoclinic.org/diseases-conditions/mgus/symptoms-causes/syc-20352362
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- MGUS: Please, let me know I not alone https://connect.mayoclinic.org/discussion/mgus-2d464e/

- MGUS diet: Any tips on food to enjoy or prevent progression? https://connect.mayoclinic.org/discussion/mgus-bgus-diet/

I’d like to introduce you to @momsys and @dazlin who were recently diagnosed with MGUS and @pmm. These would be great people to Connect with for support. ☺️

Where you having symptoms that prompted this diagnosis or was this discovered with a routine physical? Have you had a chat with a hematologist (blood specialist) about the diagnosis going forward?

Absolutely! Happy to chat. It does seem a bit overwhelming when you are first diagnosed. This has helped a lot to chat with others.

Hi Becky,
Thank you for sharing your post. Like you... I was diagnosed with MGUS/ IGG Lambda subtype as they put it in 2020, which is slowly progressing towards SMM. MM runs in my family. I am required to see my oncologist every (3) months. Although, still in the normal range, my platelet count since then has been dropping and unfortunately, my bone marrow is hypocellular. I do my research as we all have to be our own advocate. I focus on helping others and having fun. My only thing is I want to know what I can do to keep my platelets from dropping further as that can create even more issues for me.
Mitten1

Hi Mitten, sorry to hear your diagnosis, my brother died from MM he developed from being exposed to Agent Orange in Vietnam. Because of that, my Oncologist naturally zeroed in on MM when we discovered I had. MGUS. My precancerous cells fooled her and are progressing into a rare form of Non Hodgkin’s Lymphoma called Waldenstrom Macroglobulemia. My platelet count is also low but still in low normal range, so I looked for foods that can increase them. I also looked for foods to avoid that reduces platelets. Because of other blood issues “I’m damned if I do and damned if I don’t” as the saying goes. You see, I tend to throw clots because to many platelets stick together. I’ve thrown clots that have almost killed me in fact. So my options are to either bleed to death from lack of platelets or throw a clot big enough to kill me because they’re to sticky. It’s a delicate balance, my last count was 170,000, low level is 140,000, 50,000 is a disaster waiting to happen. So as the saying goes, “Be carefully what you wish for, you just may get it”!!!

Hi, I was diagnosed with MGUS 13 years ago. It was progressing slowly until I got Covid and the numbers increased significantly the IgA went up a 1000 points. That made me a little nervous to say the least. Then three months later the test show a decrease, holy moly it went down, a long with many other test results. This is like riding a roller coaster!