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Long term MGUS: What changes have you had? Do's and Don'ts?

Posted by freespirit60 @freespirit60, Jul 18 6:00pm

Hello everyone,

You can call me Freespirit! I was diagnosed with Monoclonal Gammopathy of Undetermined Significance (MGUS) in 2021. Has anyone here had it that long? What changes have occurred? What can you tell me to do or not to do? Let's start from here.
Thank you.

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

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amberl99 | @amberl99 | Jul 22 10:39am
In reply to @hsminc "I was diagnosed in 2002 and here I am in 2025. My M spike and free..." + (show)
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I was diagnosed in 2002 and here I am in 2025. My M spike and free light chains have increased but it is still MGUS.
I have paid little attention except when it is and was time for blood draws. My previous hematologist, who retired, wanted bloods every 3 months. My current hematologist orders them every six months.
I feel fine and if I had not gone to Mayo for routine care, my MGUS would probably have gone undiagnosed like so many other people. Over the years my ordinary blood tests (cbc, cmp, etc) have all been normal.
Depending on your lab values, you might want frequent blood tests at first for a couple of years but then if you are stable, every six months might be appropriate. There is no recipe that fits everyone.

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If it helps, I have smoldering myeloma and only get labs drawn every six months plus an annual mri to look for bone lesions. I am surprised docs order labs for Mgus patients more frequently than that. Costly.

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hsminc | @hsminc | Jul 22 12:47pm

Have you ever looked at the price tags for labs at places like LABCORP or Quest and then looked at EOBs that show what your insurer or health plan pays? The "charges" may look sort of high but what the health plan or insurer pays is miniscule.
When I want some routine labs done on my own, I go to the LABCORP website and order them. I pay charges of course but the amount is less than $100.
And you can go online and find other vendors where charges are far less costly. Lab work is not costly. It all depends on the negotiating skills of the health plan or insurer and how important the lab vendor is to them.

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freespirit60 | @freespirit60 | Jul 31 4:16pm
In reply to @mzpat "HI FREE SPIRIT, I WAS DIAGNOSED WITH MGUS IN AUGUST OF 2007. OTHER THAN ANNUAL BLOOD..." + (show)
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HI FREE SPIRIT,
I WAS DIAGNOSED WITH MGUS IN AUGUST OF 2007. OTHER THAN ANNUAL BLOOD TEST(S) AND A DR VISIT THERE HAS BEEN NO CHANGE IN MY LIFE. THE ANNAUL CHECK UP IS JUST TO DETERMINE IF THERE HAS BEEN A PROGRESSION OF THE CONDITION. SO FAR, NO CHANGE.
I HAVE JUST LIVED MY LIFE AND NOT LET IT BOTHER ME. I HAVE BEEN TOLD THAT MGUS IS FAIRLY COMMON IN FEMALES.
HOPE THIS HELPS.

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Very encouraging. Thank you.

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freespirit60 | @freespirit60 | Jul 31 4:23pm
In reply to @colleenyoung "@freespirit60, welcome. I moved your question about long-term MGUS, changes and tips of what and what..." + (show)
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@freespirit60, welcome. I moved your question about long-term MGUS, changes and tips of what and what not to do, to the Blood Cancers & Disorders support group here: https://connect.mayoclinic.org/group/blood-cancers-disorders/ so that you can easily connect with others living with MGUS.

There are many MGUS-related discussions that you may wish to explore: https://connect.mayoclinic.org/group/blood-cancers-disorders/?search=MGUS&index=discussions

Freespirit, what changes have you noted since first being diagnosed in 2021? How are you doing today?

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So sorry to get back to you this late. I had Covid . It was challenging. I have fully recovered now. I have had it 3 times since 2022, and I am completely vaccinated. I have so much bone pain, cold symptoms are common too, and I also have osteoporosis. I am strong though. My recent blood test done last month were good.

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freespirit60 | @freespirit60 | Aug 9 8:52pm

Very very helpful. I very much appreciate your insight and input.

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freespirit60 | @freespirit60 | Aug 9 8:57pm
In reply to @anne13 "Good morning Free spirit. I was diagnosed IgM Kappa in 2012. I was stable until 2023..." + (show)
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Good morning Free spirit.
I was diagnosed IgM Kappa in 2012. I was stable until 2023 when my FLC ratio became abnormal, I developed an m spike which was not before seen on electrophoresis and protein in my urine was found to be mildly elevated. Most recently my small fiber neuropathy has progressed. Still MGUS, although I am seeing a progression. I had a BMB and fat pad biopsy, both which were normal. I am watched closely for a disease called amyloidosis which can be seen in MGUS. All the best on your MGUS journey. Stability is the key!

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Praying for you.

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