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Hi @kk1221, you are a welcome asset to the group, having lived for 30 years and counting with MGUS. Your experience and knowledge will be especially helpful to those members who are recently diagnosed with MGUS. You can use the group search to find MGUS related discussions. For example, I think you might be interested in these 3 to start:
- MGUS at young age https://connect.mayoclinic.org/discussion/mgus-at-young-age/
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- MGUS Bloodwork Frequency https://connect.mayoclinic.org/discussion/mgus-bloodwork-frequency/
- Is there anything to help stop or slow progression of MGUS? https://connect.mayoclinic.org/discussion/stopping-progression-of-mgus/
Thank goodness you were able to get the diagnosis and care you needed at Mayo Clinic. I can imagine you are concerned about the recent changes in your blood work. Has your GP suggested a clinical trial for which you may be eligible?
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Hi Colleen!
Thank you so much for the welcome and the links to look at.
It’s been an “up & down” journey for sure. I guess I feel like the older I get the greater the odds of progressing to MM.
My GP doesn’t check my MGUS at all. Not surprising since the Drs at Mayo told me there was no one qualified to keep an eye on it in my area.
So I haven’t had it checked since 2018 I think. My next appointment coincided with the beginning of the pandemic & I was afraid to travel anywhere.
I would really love to find out about a clinical trial that I would fit in.
I was very fortunate to have seen Dr Kapoor and I know he is an amazing researcher on MGUS.
I will keep looking and hopefully this next year can get back up there.
Again, many thanks and if I can help reduce the fear of living with this condition, or answer any questions for someone, I’m happy to do so.
Kaylynn