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Hi there, I was diagnosed with MGUS back in 2017 after decades of dealing with polyneuropathy that had no known cause. Like others have suggested, read up about the condition, it will really help. In my case, the MGUS transitioned to Waldenstrom's Macroglobulinemia (aka: Lymphoplasmacytic Lymphoma), an incurable blood cancer, last year. I just finished chemo and immunotherapy. The cancer was diagnosed based on a bone marrow biopsy along with other blood abnormalities such as high kappa light chains, high kappa/lambda ratio, an M spike, and other various and sundry abnormalities. The one piece of advice I can give is to get a good hematologist and get follow up bloodwork regularly. Track any symptoms you may be having, even if they don't seem important. Another thing, don't let worry take over your life. I am convinced that stress, worry, and anxiety have contributed to my health issues. All the worrying I did didn't change the outcome and just robbed me of joy.
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I am happy to hear that you have finished treatment.
I hope you recuperate from the tough treatment journey as quickly as possible.
May you enjoy a long healthy remission!
I so appreciate the sharing of your story.
It is important to know how quickly that balance in the body can change!
Paying attention to symptoms is crucial.
You have also reminded me that I must not settle for a typical oncologist treating a range of cancers in a small rural clinic. This is not going to be a comforting situation.
I will return to the research University setting or the Mayo for advice about monitoring my own health situation.
(I know there are reasons my “best” specialist and most attentive physician suggested I begin seeing a hematologist again.
Proper monitoring and oversight can become vital more quickly than we realize, even if the statistics are very low for chance of progression.
Not one of us is a statistic; we are people. And there is also never an “average” patient.
We are each unique.
Courage!
Back to self advocacy (even though this is exhausting, sometimes humiliating, and difficult.)
Thank you!
Again, wishing you well across cyberspace!