MGUS with bone pain?

My husband apparently had MGUS for about 5 years but we didn’t really know it until his white count took a dive and then he got a bone marrow biopsy by the hematologist he was seeing. Yes he had bone pain a lot in his back and would even go and get injections. But once the biopsy was done at a local hospital that had just received a partnership with Mayo the diagnosis of MDS was discovered. At which time we then got a referral to either IU or St. Francis hematologist. He has been with these drs at St.Francis for over a year now and we have been very fortunate in his care. Please get yourself where you feel valued.

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.

Sorry for all of the typos, not wearing my glasses, but I hope y'all can make sense of my rambling. Thank you everyone for welcoming me here. Blessings to you all.

@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

I was seeing a rheumatologist for misdiagnosed bone pain when I was diagnosed with MGUS. I eventually switched rheumatologists and was correctly diagnosed as reactive arthritis and given medicine that greatly reduced my pain. Unfortunately, I still have some pain on a regular basis, just significantly reduced. I saw my oncologist/hemotologist this week. The first question they asked was whether I had any pain. So yes, I do believe that we can have pain with MGUS; but I don't believe that all of our pain is necessarily caused by MGUS. Next week, I will be updating my bone scan which hasn't been done in 2 years. I don't expect any lesions despite my slowly rising numbers. I do, however, expect the pain to continue.

I have bone pain as well. It’s not to the point where I can’t walk but sometimes I shake from the pain. I have it in my hips, legs and hands. Bilateral hip cray according to rheumatologist was not concerning. Wants me to try PT before getting an MRI. I have to speak to my oncologist bc rheumatologist said he thinks my hip pain could be associated with the increased levels of protein due to MGUS. I don’t know what to think.