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Hello, I am new to all of this. Our doctor informed me three weeks ago that I have MGUS. To give you a brief summary, I am not very confident in my doctor's diagnosis as he only stated that he believes it to be MGUS based on the biopsy results from October 30th, 2023, and my blood work done on September 30th. I asked if there should be a baseline blood panel going forward from the diagnosis date, and he replied, "Yeah, we should probably do that." The results from my recent blood work show that my WBC is elevated and that both my Kappa and Lambda free light chains have gone up since September.
KAPPA FREE LIGHT CHAINS
Nov 28, 2023
2.33mg/dLHigh
Sep 11, 2023
2.26mg/dLHigh
LAMBDA FREE LIGHT CHAINS
Nov 28, 2023
9.1mg/dLHigh
Sep 11, 2023
8.55mg/dLHigh
KAPPA/LAMBDA RATIO
0.26
Should I be concerned at this point? I won't burden you with the long list of physical issues I've had and still have that no one can explain.
Replies to "Hello, I am new to all of this. Our doctor informed me three weeks ago that..."
Brandy @bvz4483, welcome to the Forum. As Ginger suggested, we are all best served by finding a hematologist/oncologist who is very experienced with MGUS and Multiple Myeloma. MGUS is not cancer, but it can morph into cancer. The statistics are on our side that it will not, however. It’s shocking to get the diagnosis and I remember feeling very anxious. Three years out, I am much more relaxed about it. I got blood draws every three months for a couple of years and then “graduated” to every six months seeing my hematologist/oncologist. If your numbers are stable, there is a lot of variation in how often you are seen. I have learned from being on this forum, peoples symptoms are very different and sometimes it’s hard to tell if aches and pains are due to the blood disorder or if there’s something else going on. It forces us to be diligent about our medical care, which is a good thing when you think about it.
I’m glad you found found us, and I look forward to hearing more about your journey.
Patty
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@bvz4483 Brandy, welcome to Mayo Clinic Connect. As is typical of chronic health situations, looking at trends rather than individual test results is most beneficial. Are you under the care of a hematologist oncologist, now? If not, I would strongly suggest that you advocate for that. A specialist will have the best information, and your best interest at heart. If you are near a Mayo Clinic campus, that would be ideal, but there are also many large teaching hospitals.
As you are finding out, there are a lot of nuances to MGUS, and not everyone experiences the same things or to the same degree. Regular monitoring of your situation is critical, for peace of mind if nothing else! Here is an existing conversation that is current here on Mayo Clinic Connect: https://connect.mayoclinic.org/discussion/mgus-diagnosis/
Also, the International Myeloma Foundation has a great article discussing the differing types of MGUS and myeloma. Not to be scared, but to be informed! https://www.myeloma.org/what-are-mgus-smm-mm
Any other questions that you have for me?
Ginger