MGUS: Please, let me know I not alone

@kenrice2011 Welcome to Mayo Clinic Connect. We certainly can understand your anxiety and confusion regarding what might be happening right now with you!

Many of us go through a variety of testing and examinations getting to any diagnosis. None of us are medical doctors. We are all fellow patients and family members of patients sharing our experiences and what has worked/been meaningful for us. We cannot/should not be doing any diagnosing of conditions.

I suggest you wait for the results of any testing and have that consultation with your doctor. How soon will that be after your kidney biopsy? In the meantime, acquaint yourself with Mayo Connect an meet more of our members here. We all have a story!
Ginger

I was diagnosed with MGUS December 2024- this started in December 2023.
My lab results were all over the page… kappa/lamba ratio of 3.69- bone pain, fatigue, doggies, GI issues, tint/numbness in hands and feet…etc.
BUN 26 Creatinine 1.61 EGR 47- I have a kidney biopsy next month- any chance it’s Amyloidosis ?

Katy exactly my thinking!

Patty

My gastro doctor was looking to see why I was having abdominal pain and referred me for a CT Scan which indicated splenomegaly---enlarged spleen. They referred me to my Hematologist/Oncologist to understand why the spleen was enlarged. She initially thought Myelofibrosis but the test results did not point to that, but that's when she concluded MGUS. I have learned that my spleen reacts when I eat too much or have too much liquid like soup, as I feel full and pain radiates to my left shoulder. So, doing my best to avoid those items right now. Had an Upper GI procedure as well after all the testing with my Hematologist/Oncologist and nothing found.
Everything felt so random,
and if I had not had that pain, I would not know about the MGUS. So, I tell my friends and family, don't ignore symptoms---check them out!

@katytx Welcome to Mayo Clinic Connect. The story you related has many of us nodding in agreement, as we have gone through very similar times!

Was your doctor looking and testing you for something else when your MGUS was found?
Ginger

Hello Friends--- I was diagnosed with MGUS in 12/21 and it can be very scary if you let Dr. Google take you down the rabbit holes. I'm a 62 female and had abdominal pain so went to the gastro doctor who did a CT scan and saw the enlarged spleen. They sent me to a Hematologist/Oncologist and the testing began, including the BM biopsy. I was confused at first on what the next steps were, but was explained that more people probably have MGUS and don't know it and living excellent lives. The 3 month checks turned into 6 months and I have just completed my labs this week along with the 24 urine collection. I watch all my numbers jump up and try not to get too freaked out---I can't do anything about it. I have a fabulous oncologist (shout out to Texas Oncology) and she has talked me off a ledge when I expressed my concerns. But I do a diary with my symptoms as I don't know what could be an issue and what is just a random thought. This gives me a bit of "control" that I'm helping myself with the crazy watch and wait prescription.
I have been a go-getter all my life and want to take action so having MGUS is the exact opposite of my normal course of action. And it is hard to explain this to family and friends---no on has heard about this. My advice to you is ask your oncologist questions so she/he understands your concerns, keep a diary, stay away from Dr. Google, and reach out to a community ---wish I had done that when I was first diagnosed--you're already on a right path! Hope this helps your concerns and sending you much support! Hugs from Texas!

I'm with you I was diagnosed with MGUS a year ago and have been extremely sick. I have gotten no where with treatment we're I'm at and would love to visit the Mayo Clinic!!!!

Thanks! The 90% remission rate was what caught my eye. Always hoping someone will unlock the cure for this and all cancers.

Hey y’all. @gina5009 brought this to our attention in another thread. Seems like a pretty significant finding. It’s always good to have some positive news. As the amazing Ted Lasso says (If you don’t watch Ted you’re missing a solid show)

"You say impossible, but all I hear is 'I'm possible.'"
https://m.jpost.com/health-and-wellness/article-744499/amp

I thought you might be interested, I have run a red cell count of 3.75-4.00 most of my life (I am now 92). I have been diagnosed with MGUS this past year (because I developed Trigeminal Neuralgia) and was sent for some additional lab tests. I have had two additional testings, and they tell me if my next one is normal or about the same I only need to be seen once a year. Prior to this new diagnosis there was never a mention of Multiple Myeloma. Hope this may give you some peace of mind. I think you have a very long life ahead of you. Start enjoying the precious moments, and let the years take care of themselves.
Gina5009