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Hello everyone
I am new to this group. I am in my late 40’s and just diagnosed with MGUS the past summer. Which was scary and devastating to myself and my family. I didn’t know anything about MGUS. The info I received from the Hematologist was very not helpful. The dr didn’t explain things well or give me information on what to look for concerning symptoms which was upsetting. I felt lost and not taking care of and my new MGUS diagnosis was not taking seriously. I have been suffering from pain all over for years but just kept suffering. I had testing for rheumatoid arthritis and recently found out that I have fibromyalgia and diabetic neuropathy. I am type 1 diabetic for years. It has been a journey that I am still learning. The recent diagnosis was found out by a blood test in rheumatology clinic for the second time but the second time is when I found out that I had MGUS. I also went to dr Google to check out more info on this. I had a referral to hematology clinic and had only blood work to confirm and the bone marrow biopsy but no full body CT scans due to insurance. So at this point I have not had a recent full body CT scan. Which is concerning to me but my hematologist would not push the full body CT scan with insurance even though insurance sent a letter explaining what they needed to approve the Full body Scan. My doctor just looked at all my other scans or X-rays for different times and areas that I had X-rays. What should I do at this point? I am in the process of getting another opinion from a different hematology clinic. Any advice or suggestions?
Replies to "Hello everyone I am new to this group. I am in my late 40’s and just..."
@gracefullywomen4
Ginger is wise to advise that you advocate for yourself (as she is simply wise!). I think perhaps physicians are frustrated with a MGUS diagnosis because there’s no active treatment roadmap for it and no cure. They really like to have an established treatment plan that they can implement and the patient will show progress.
I had to rethink it myself when I got the MGUS diagnosis. On this forum, I read a lot of the personal stories of fellow travelers down this MGUS road.
I got points on how people advocate for themselves with their physicians, how to choose a physician that was a good match for me, and even how to talk to them in a way that they took me seriously.
Some MGUS patients have taken their diagnosis very seriously and use diet, exercise, and sometimes even supplements to feel healthy and live their best lives. Over time, you will develop a strategy that works for you.
Before you change doctors or get discouraged, I would make a list of your questions and ask for telemedicine or in person appointment and just talk frankly with him or her. Explain that you felt discounted and did not get your questions answered. If your physician seems reluctant to answer all your questions or spend the time with you, consider getting a referral for another hematologist/oncologist.
Will you let us know how it goes for you?
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@gracefullywomen4 Welcome to Mayo Clinic Connect. If your hematologist has determined you are not high-risk MGUS, they might be reluctant to order the scan. But a low-dose whole body CT scan may catch bone lesions and is usually recommended.
Always advocate for yourself! If you can get a second opinion, do so. Here is a link to the International Myeloma Foundation, that a lot of good information: myeloma.org
Ginger