Does anyone else have MGUS?

I agree I was diagnosed with MGUS also

My diagnosis is in. Negative for amyloidosis. A hypertrophic, asymmetrical heart wall septum, plus a slightly thickened heart wall, with a Mspike of 0.99g/dl of IgG lambda was the original concern for amyloidosis. Nuclear heart scan (PYP), PET scan, abdominal (fat pad) biopsy were all negative for amyloidosis.
Diagnosis is MGUS. My bone marrow biospy showed a 5.3% plasma cell count.
Treatment: repeat labs in 6 months.

Interesting note: They did a chromosome analysis on the abnormal plasma cells. Four of the 20 (20%) showed a loss of the Y chromosome. This can be old age related in males (I am 66, year old male) and it also can be a marker for other bad things at a higher percentage.
Have any other males out there on this forum with MGUS seen this if cytogenetic testing of a bone marrow biopsy was done?

I’m same as you.
Very frustrating,isn’t it?

@greenlantern Best description of MG I’ve ever heard. Thanks!

@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?

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.

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’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.

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

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.