Does anyone else have MGUS?

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.

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
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https://www.healthline.com/health/how-serious-is-mgus
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~What’s the science on diet and MGUS/SMM
https://connect.mayoclinic.org/discussion/whats-the-science-on-diet-and-mgussmm/
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~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? ☺️

Thank you!

Thank you Lori and welcome new folks. Andrea, I very much agree with Lori that Amazon is premature!
I have sure felt that fear when I was first diagnosed with MGUS. The watch and wait is particularly hard for those of us used to taking initiative with our healthcare.
Lori has provided some good reading. If you can try not to panic, you’ll soon realize that you will feel better the more zen you can stay about it. Easy, right? It gets easier. The odds are in your favor.
Have a great week. Glad you found us!
Patty

You’re most welcome @andreasschmieg. It often helps to know you’re not alone.
I just want to make sure you’ve seen the reply from @pmm welcoming you to the group. https://connect.mayoclinic.org/comment/886232/

You’re in good hands here. ☺️

@marvey, I've moved your post into the MGUS discussion which you can now find here:
- Does anyone else have MGUS?: https://connect.mayoclinic.org/discussion/mgus-diagnosis/

I was diagnosed with MGUS and MS last year within weeks of each other. Did everyone have a bone marrow biopsy to confirm the MGUS diagnosis? I don’t have any of the CRAB criteria but being told that based on my blood tests, I have MGUS.

Steffiney, I was diagnosed with MGUS via a blood test for another medical issue. I was told by my hematologist/oncologist that I don't need a bone marrow biopsy because I do not satisy any of the CRAB criteria.

Oh wow ok. My doctor said a bone marrow biopsy would give him a for sure diagnosis since I don’t seem to have other symptoms.

S. I suggest you chat with your doctor. I found these two references that you may want to read first:

“A bone marrow can be deferred in patients with low risk MGUS (IgG type, M protein < 1.5 gm/dL, normal free light chain ratio), in patients with uncomplicated suspected IgM MGUS < 1.5 gm/dl, and in patients with light chain MGUS who have a serum FLC ratio < 8, in whom there are no clinical features concerning for myeloma, macroglobulinemia, or amyloidosis.” From: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9445066/#:~:text=A%20bone%20marrow%20can%20be,clinical%20features%20concerning%20for%20myeloma%2C

“In patients presenting with low-risk MGUS and normal hemoglobin, calcium, and renal function, the risk of missing a diagnosis of SMM and MM by omitting BM is < 1%. BM should be deferred in these patients in preference to clinical and laboratory monitoring.” https://pubmed.ncbi.nlm.nih.gov/32376870/