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@sunsetchris

Yes, I agree. I saw a hem/oncologist about 2 years ago, here, but I just felt I was wasting his time, as my MGUS was such a seemingly "innocent" condition and his waiting room was filled with cancer patients. Made me feel so guilty for being there, taking up space. We decided that my primary could monitor the M-spikes. The local specialists and primaries just don't seem to understand the symptoms I have that just come and go and because I seldom experience them when I'm there, it seems they just want to move on and send me home. I've seen rheumatologists, neurologists, orthopedists, podiatrists, cardiologists, hematologists/oncologists, you name it. They all note some sort of connective tissue disorder is likely but no one, so far, really ever seems to want to even try to find out which one. I've had 3 foot surgeries, stress tests, X-rays, PET scans, MRI's, CT scans, stress fracture of my left ankle, gall bladder removal last year, blah, blah, blah. Used to get chronic sinus infections and bronchitis all the time, (years ago), UTI's, basal cell carcinoma a few years ago, cyst and lesions up and down my spine, just all so weird. It may be time, I think though, to see if that last hem/onc would be willing to see me again and get serious about discussing my MGUS as the reason for some of this. THANK YOU for your helpful and supportive words! Meant sooooo much!

Dawn

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Replies to "@sunsetchris Yes, I agree. I saw a hem/oncologist about 2 years ago, here, but I just..."

@suppiskey2surv I'm surprised you haven't had a Bone Marrow Biopsy (BMB) yet. On my very first hem/ono visit for MGUS, she mentioned the BMB as an important step. We decided to postpone it until we see how quickly my MGUS progressed. A few years later and still with no symptoms, my numbers were high enough to now confirm where I was headed with the BMB. As it turned out, the BMB results changed my diagnosis from IgM MGUS to Smoldering WM Wild Type. I still have none of the symptoms that I'm sure will come, but now I know what conditions to look for.

@suppiskey2surv I absolutely agree with a previous comment re bone marrow. You should get a baseline bone marrow. You are having , it seems to me many other unnecessary testing if the diagnosis is MGUS. Go back to the Hem/Onc and I would recommend stopping jumping around to all different types of doctors. The fracture is of significance for MGUS and possible relationship to multiple myeloma. ( i did have a hip fracture). IF you have MGUS the only doctor you should see for MGUS is the specialist in Multiple Myeloma which is a hematologist/oncologist. The fracture is possibly related and an orthopedic is a necessary addition, but too many cooks in the broth as related to MGUS. Just stick with the MGUS/Myeloma team and Primary, and let them refer you if something else pops up. MGUS is a watch and observe/wait condition. It may take years to convert to cancer if ever. I too was initially feeling anxious but after discussing all with my Hem/Onc and primary I stayed away from all unless they referred me. IE I had protein in my urine. I emailed my MGUS team and my primary referred me for a kidney scan. All negative. The only other concern for MGUS/Myeloma I see in your history is the spine and fracture. So I would recommend stop going to so many specialists and see only the absolute necessary. I might concentrate more on what could have caused it and can you do anything about that? I did much research and found that 40% of World Trade Center (WTC)survivors and workers in offices near by had a diagnosis of MGUS. I at the time was working at a very close trauma center which received many patients from the WTC. It was one hot mess with debris all over the ED. Thus I was able to get more information as to how I could have gotten it. However I cannot tell you why it appears 20 years later. But I have learned that you cannot find a cure as there is none, and it may never progress, and yet again it is a precursor to multiple myeloma. So I have an annual visit right now with the HEM/ONC., Primary monitors blood and urine every 4 months. There is nothing they can treat and so far so good. Blood work stable, an occasional appearance of the M spike and latest is elevated Proteins in urine. My M spike first appeared in 2017 and it doesn't show up but every two years, elevated but Not Multiple Myeloma which is the cancer that is associated with MGUS and maybe some lymphomas. I have taken a very lower key approach and see absolutely great doctors who do what is necessary. I am calmer, and hope to stay on top on my condition so I do not miss anything but I do have confidence in my doctors and leave the diagnosing to them. I do report any changes and let them decide the significance. Better for my mental health. Best of luck and recommend sticking with the necessary doctors and appointments as recommended.