MGUS: Please, let me know I not alone

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!

@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!