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.

I do not have my senior gravis. I have M GUS. But I have extreme pain in my hands, nerve pain, and now it’s in my feet and I am Woopsie, which is just a cute word for not steady on my feet. I’m 76 and I have been active all of my life and this has totally thrown me a curve. I just don’t know what can be done for the pain, neuropathy, unbalance. I just don’t know what to do. ? I do pray a lot.

I'm 70 and have had MGUS for 8 years. I have minor polyneuropathy (mostly can't feel pain as much) that could be associated with that or my celiac disease. MGUS doesn't have as much research as SMM or MM because it is considered asymptomatic with a 1%/year risk of progression to SMM or MM. My kappa levels are about 300, kappa/lambda ~28, and a few other markers are elevated, but not enough to be SMM. It doesn't limit me. I try to focus on what I can do, get enough sleep, destress, and exercise.

@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?