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@silversun egad! What twists and turns you have endured on your path. I see what you mean when you say that knowing about your MGUS diagnosis is somewhat of a good thing.
Most MGUS patients are diagnosed when their physicians are in hot pursuit of something else.
I was talking myself down from panic when I was diagnosed about 3.5 years ago. This forum helped me as we have members who have had no progression of their MGUS for decades. It allowed me to calm my fears and remember that each day should be savored.
I also believe that I get the best medical care possible with my regular bloodwork and scans. It would be hard for something else to slip by my eagle-eye oncologist/hematologist and his radiologist sidekick completely. I fell like I am in good hands.
So when you go back in 4 1/2 months what is the strategy?
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I have once a month b12 injections set up and repeat bloodwork and apt in July. Ordering normal cbc/iron panel. We are approaching it as: if my cbc is stable and the flc tests stay within normal ranges we will just keep monitoring. We are repeating the M tests every 6 months now.
If anything strays then we will react.
Since I have the mitochondrial and autoimmune disorders too the other dr runs his own extra tests and by now I feel like I am an honorary expert of my symptoms. I take lots of steroids here and there and have researched many mab’s so I feel like I will know when it’s time to advance my options.
7 years ago was my panic. I grieved and accepted what seemed to be the future. And although I know it is unpredictable, I am prepared to explore the options as they become available.
Since I had the BMB so early on we will repeat that IF my numbers become abnormal.
Oddly, I do indeed feel like I am better off now than I was in the beginning. I have specific areas of relevancy to focus on instead of unanswered questions; that is the comfort that I feel. I’ll take it!
I also look forward to guiding myself from what I can learn from other’s lived experiences.