Does anyone else have MGUS?

Thank you!

Hello @andreasschmieg and welcome to Mayo Connect. Well, you may be new to the MGUS club but you’re in good company. We have quite a few members with MGUS and I think you’ll find them very encouraging and supportive. Anytime we get a diagnosis of something we’ve never even heard of before it’s natural to be filled with the mental terror you described.
But knowledge is power and I think once you’re more familiar with with what MGUS is all about and that this is a slowly progressing situation that may not change in years, you’ll be a little more at ease. I know what it’s like to wait for that proverbial other shoe to drop. The thud isn’t always as loud as we imagine. ☺️

I’m posting quite a few links below. The first is from a discussion, I Have MGUS. One reply that I think will be most helpful, to get you started, is from our member @pmm who has MGUS. She’s so gracious and willing to share her experiences with others and I think you’ll find her very reassuring. Here’s her comment I’d like you to read:
https://connect.mayoclinic.org/comment/842935/
It’s from this discussion group:
I Have MGUS:
https://connect.mayoclinic.org/discussion/i-have-mgus/
Other members who have or have had MGUS besides @pmm, are @teedlum @gingerw @michey @2012can @dianegrant and many other members in the various conversations.
Below are other links for information on MGUS and also some conversations regarding diet and MGUS.
https://www.mayoclinic.org/diseases-conditions/mgus/symptoms-causes/syc-20352362
~~
https://www.healthline.com/health/how-serious-is-mgus
~~~

~What’s the science on diet and MGUS/SMM
https://connect.mayoclinic.org/discussion/whats-the-science-on-diet-and-mgussmm/
~~~

~MGUS diet: Any tips on food to enjoy or prevent progression?
https://connect.mayoclinic.org/discussion/mgus-bgus-diet/
~MGUS and Curcumin/Tumeric
https://connect.mayoclinic.org/discussion/mgus-and-curcumintumeric/
Don’t go ordering those graver markers from Amazon anytime soon though, ok? ☺️

New to the club! Three months of mental terror and insurance fights just to get all the tests approved. Now a pre-cancerous condition and a recommendation to do nothing about it? I feel like a ticking time bomb. Is there any healthy food that can improve my chances? Amazon already advertises grave markers to me.

Thank you, Lori. I honestly felt that I was losing my mind. It is wonderful to be amongst people who understand.

Sorry that some of you have had bad/poor luck in finding medical support. My oncologist (Minneapolis, MN) follows me. After more initial testing, she now repeats all the bloodwork (including Light Chain info) annually. So far, so good! (Diagnosed about 6 years or more ago, after several anemia-range blood counts.)

Unfortunately, the need for appointments can outnumber the availability and that’s very frustrating for patients. I’m glad you were able to get in with MD Anderson. They’re an excellent cancer center too. They have a similar standard of care as Mayo and I would expect your doctor will listen to you and not be dismissive.
Do you have a list of questions all ready to go?

It’s so frustrating when you know you’re not well and your doctor is dismissive! In your case, you weren’t even told about your diagnosis. I’m so sorry you’re going through that. You should have much better attention and care at the University Medical Center.
We have a discussion in the forum on
How to get off to the best start with a new specialist.” You might find some useful tips in the conversations. I’ve posted the link below.
Your Tips on How to Get Off to the Best Start with a New Specialist: https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/ --

I’ll be nudging you with my elbow tomorrow to make that call. 😅 Good luck and let me know what you find out, ok? Hugs.

I have tried for a second opinion at the Mayo in Jacksonville, but I was informed they are not taking any patients with a MGUS diagnosis, and I’m a Mayo patient. There’s a 1-2 year wait. So my PCP referred me to MD Anderson and I have an appointment on Friday. I’m hoping the doctor will answer my questions and explain what’s going on instead of dismissing things.

I live in Henderson, NV. I found a new hematologist I'm calling tomorrow. I'll keep you posted thank you for your information. I'm checking with the University Medical Center near me. I think getting a second opinion is the first step. My current Dr didn't even tell me about the diagnosis. I found it in my paperwork, which I now have to carry my medical record with me. This has truly been an experience. And I'm so glad to have you now.

Mayo Clinic also partners with select medical facilities in other states who have met the high standards set by Mayo. I’m not sure if there is a clinic or hospital located in your state but here is a link to the map so you can possibly find a location near you. Mayo Clinic ... Care Network https://www.mayoclinic.org/about-mayo-clinic/care-network/members/map
Other options would be university hospitals or larger research hospitals. Are you near a larger city?