Does anyone else have MGUS?

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?

If this helps, I wass diagnosed ten years ago and took it very seriously, My oncologist/hematologist, after taking dozens of tests, includingmy urine and a bone marrow biopsy, said I'll see St. Peter from something else, not MGUS.

I see him once a year (my doc, not St. Peter at the pearly gates).

@greenlantern Welcome to Mayo Clinic Connect. It's good to hear from someone who has has a long-term MGUS case and is still going strong!

Do you get testing done at that yearly appointment? Have you seen any trends?
Ginger

@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

Yes, blood tests for the usual markers... immunoglobulins A, M, -- the alphabet. No, trends, but I've had Myasthenia Gravis for 22 years, so that is the king of comorbidities.

If you haven't heard of MG, I explain it like this: if i see a curb while walking, my brain says to my nerves "send a message to your legs to step up" -- but my legs say "never got the message". So, I stumble.

Damn acetylcholine receptors. I'm not drunk, I'm just uncoordinated.

Thank you Ginger! I will keep on advocating for answers to my healthcare.

I’ve had it for few years now, and my levels are so low that I only have to see my oncologist hematologist yearly now.
I too was told my chances of getting myeloma was very slim.
With everything else I have going on (CIDP) that made me less stressed.
Bad enough I’m numb in both feet,and my r hand.
Can’t walk without cane or walker, my balance is so bad.
Have been going through this for 13 years now.
Really effects my quality of life.