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MGUS with bone pain?

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

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@beckyjochilson

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.

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Replies to "Can I please interject? Back in 2013 I had a 10 day bout with C difficile..."

@beckyjochilson Welcome to Mayo Clinic Connect. I am wondering if the criteria previously used has changed to a current standard, and that is why you are seeing/hearing different accounts. Not to mention different labs and review processes. It would be frustrating to me, also, to be figuring your have a health concern, then find out it might not be that, afterall!

Not having any lesions is a good thing. Like you, I would question the symptoms and push for more comprehensive testing to figure out what is going on. Good healthy diet, moderate exercise and restful sleep will go a long way towards helping you feel better; I know that from my own experience.
Ginger