1. < Blood Cancers & Disorders

MGUS: Please, let me know I not alone

Posted by bonnie canby @bonniecanby, May 21, 2012

i Have gotten desperate enough to try to get an appointment at Mayo in minnasota for mgus. anyone out there that is also been diagnosed with this time bomb.
I am also suffering with anemia and pvc's and a lot of pain. please let me know that I am not alone. bonne

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katytx | @katytx | Jun 2, 2023

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!

REPLY
2 replies
Mentor
Ginger, Volunteer Mentor | @gingerw | Jun 2, 2023
In reply to @katytx "Hello Friends--- I was diagnosed with MGUS in 12/21 and it can be very scary if..." + (show)
@katytx

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!

Jump to this post

@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

REPLY
1 reply
katytx | @katytx | Jun 2, 2023
In reply to @gingerw "@katytx Welcome to Mayo Clinic Connect. The story you related has many of us nodding in..." + (show)
@gingerw

@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

Jump to this post

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!

REPLY
Mentor
Patty, Volunteer Mentor | @pmm | Jun 3, 2023
In reply to @katytx "Hello Friends--- I was diagnosed with MGUS in 12/21 and it can be very scary if..." + (show)
@katytx

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!

Jump to this post

Katy exactly my thinking!

Patty

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