Does anyone else have MGUS?

@fredes you’ll find that you will have some fluctuation in all probability. My hematologist/oncologist tells me not to worry as he will not unless there is a big jump that warrants further investigation.
One of our most productive discussions was when I asked him to tell me what constitutes lab results that would cause concern. I recommend that you have that same discussion. I worried so much more for the first year or so after I was diagnosed. My lab results have remained relatively stable.
Have you had the opportunity to get your questions answered?

Patty, thanks for all your responses here. Blood work and hematologist next month where I will ask that same question you posed about what results should be concerning. Great question.

@planxty7
HI Patty , I have had MGUS diagnosed for a little over a year. Yet looking over my past bloodwork 'and I see areas that were showing before official diagnosis. Actually I am told my blood work appeared in 2017 and only acknowledged last year as MGUS. Some primary docs see a lot of MGUS and some do not worry about it. Hematologist are very active but you have to be your own advocate. Apparently there are many with MGUS. I am showing protein in urine . Oncologist wants a 24 hour urine before my visit in January. I did have a hip collapse ( bone was powder) in my L hip and had a hip replacement. I am also told that people exposed to the World Trade Center disaster have a higher rate of MGUS than just regular people. Actually 40% if I remember the conversation. . I happened to be working in area at the time. And I am registered with the WTC victims compensation organization..And I have MGUS for over a year. So if you were anywhere near the area or have friends in the area let them know to get at least a baseline blood test. My son was right there and scoffs at me for the recommendation. Best of luck.

Yes I have MGUS just over a year but when looking back at blood work it first appeared in very minute quantities in 2017. My primary does take good care of me and watches over me in between visits to hemonc.

Anyone else work in area of World Trade Center after the buildings were destroyed and breathe in the debris? If so get registered with the 9/11 victims compensation fund.

My husband was diagnosed with that some years ago. When you have your blood test ask physician to request your IGM score. They can do it with regular blood test but may have to send to another lab.
Just another thought.
M

@mphaddican Why request am IGM score?And what is it it?

Sorry to be so vague. I am not a physician but my husband was diagnosed with MGUS many years ago. He finally made an appointment Dana Farber. His blood test showed an IGM high level and it indicted that he had Walldenstroms. It is very rare .
If the IGM is high it can indicate that. Don’t be afraid I am just throwing that out there. It is rare and some times missed
On a good note he has had infusion treatments over 6 years ago and is doing fine. His level has been normal.
Mayo is very familiar with that disease and has been helpful too.
M

@mphaddican

I’m so sorry to hear that. Both your minds must be full of mixed emotions/anxiety.
I know with MGUS (I can spend hours educating myself) that IgM levels are low (lower than IgG) so anything considered high for that is well concerning. Medical professionals don’t always answer questions (lots of poker faces) …

@ems2012

Thanks for your response.

Since my husband’s treatments through Dana Farber his IGM levels have been normal for the last 6 years. They did find out that 40% of those with WM have a gene that normal treatment does not work for so they adjusted the infusions with that in consideration for my husband. It worked.
My high praises for medical research and researchers! They have to function in these uncertain times and they seem laser focused! Thanks to all of them! 😀