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MGUS with bone pain?

Blood Cancers & Disorders | Last Active: Feb 10 12:28pm | Replies (36)

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@gingerw

@nathangolden Welcome to Mayo Clinic Connect. You have had some great information passe on to you already, and I echo all those comments! Advocate for yourself, even when it is unpopular. Your health is the most important thing, and if your oncologist doesn't seem to care now, he/she won't in the future, either.

I am concerned that you should have a scan to make sure you don't have lesions in your bones. Please make that call today, and let us know!
Ginger

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Replies to "@nathangolden Welcome to Mayo Clinic Connect. You have had some great information passe on to you..."

Can I please interject? Back in 2013 I had a 10 day bout with C difficile coilitis that nearly took my life. My body fought hard along with the vancomycin I was administered, and My health has NEVER been the same. From the time of my hospital release in Dec 2013, I was sickly and in so much pain. My PCP refereed me to a neurologist which ran numerous test on me to finally discover the M protein, I was 48 at that time. I was sent to Emory in Atl to an O'clock/ neurologist that did a BMB, more blood work, 24 hour urine and Pet scan. At that time my # from BMB was 11% which I was told"just crossing the threshold" of Myeloma. For the past 10 years I've suffered bone pain, mostly down my embryos spine until recently my ribs, my right collar bone and my right hip. I had a BMB and a PET scan early last week that came back MUCH better than any done in the previous years. My M Spike was 1.9 when originally tested at Emory in 2013 and through the years has dropped to 0.98 steadily. Now it's back up to 1.1 with elevated maps and K/L ratio, which has been consistently increasing. Anyway, long story short, my oncologist that I've had for over a year now told me my recent BMB results are between 2 & 4%, no major lessons on PET either. What the heck is going on??? My pain at times is debilitating, I'm nauseous all the time and feel like I have the flu daily. She's now telling me Ihave Mgus. Am I the Benjamin Button of MM? Someone please help me make this make sense.