Question to ask about MGUS Diagnosis

I have just been found to have MGUS, after asking my PCP for recommendations after 60 year old niece diagnosed with multiple myeloma and my sister having had it in 1991 and dying 3 years later (which was the norm then.) My question is do any of you with MGUS or MM have other family members who have been similarly diagnosed? Supposedly both are non-hereditary, but I am questioning that. We are all female and white, not what supposedly typical patient with MM is.

My Kappa/Lambda ratio advanced a bit but was not alarming to my hem/onc doc because my Kappa was slightly higher but my Lambda went down.
It made me laugh as I was typing this because it’s all Greek to me… Which is okay because it is Greek. 🙂
So all is good with the old wait and see game for three more months.
Wishing everybody peace and may all your health news be good.

Ginger, thank you so much. I truly appreciate your response. This is a
pretty consistent thing. I have to get my pelvis mri on the 22nd. after the
skeletal X-ray found something. I will keep in touch. Take care.

@omemee There can be several causes of foamy urine. If you have a full bladder, and the urine is expelled forcefully, this can cause a foamy appearance. Dehydration can be another cause. To experience foamy urine from time to time is normal. But if you have it consistently, you may be seeing the appearance of protein in the urine. This can be caused by kidney issues, as noted in this article from WebMD https://www.webmd.com/a-to-z-guides/proteinuria-protein-in-urine

In the interest of not putting the cart before the horse, I like to look at all possible factors. While I deal with multiple myeloma, I also have kidney issues not related to the myeloma. Some people do indeed have kidney involvement from MGUS/myeloma situations; for me, the drs tested and found they are separate situations.

Reach out to your medical team and get their thoughts on what you are experiencing, based on what you see and the labwork for your particular case. Painting with a broad brush is not a good thing, that is, assuming it must be related to the MGUS.

Let me know what you find out, okay? And feel free to ask away, or reach out for support. I'm only a keyboard away!
Ginger

Do any of you have foamy urine? Would someone explain. ? Have had mgus since 2016

@bens, Mayo Clinic experts often work with local physicians and oncologists for continued cancer care. This may require an initial visit to Mayo Clinic, followed by treatment administered locally. Virtual visits may also be an option.

Here is more information about multiple myeloma care at Mayo Clinic https://www.mayoclinic.org/diseases-conditions/multiple-myeloma/outcomes/gnc-20514923

To inquire about options available to you, I suggest you start by contacting Mayo Clinic appointments for a phone interview with a scheduler. Here's more information on how to get started: http://mayocl.in/1mtmR63

Cataracts are, if you have any other signs with them, markers of developing Amyloidosis of some sort. Yes, they should be taken seriously, and watched carefully. Track them consistently, and learn whether they seem to be expanding their reach in any way. Also, track your various white cell issues. oldkarl

I was diagnosed with MGUS in 2020. I can agree with all of the comments above. Mine was also diagnosed during a test for something else. Continuing surveillance blood work and thankfully numbers have not changed much. Trust my hematologist after having gone through a second opinion. After the dust settled in my mind about this blood disorder and it wasn’t easy I’ve decided it’s not going to rule my life. I sometimes think it would have been better off if I never found this out. But on second thought I realize it may be a God send so if I develop MM it will be early. Hopefully if that happens there will be more and better treatments for MM. so in my mind now I don’t think too much about MGUS. However at each time I go for bloodwork I always have questions before and after the appointment as part of the blood results come in after the appointment. And the doctor himself calls me. Very important to understand it all. Enjoy each day!

Tuesday! They drew blood yesterday. Looking forward to getting that over with for another three months. Fingers crossed.

@pmm You're right. Sometimes we are not able to get in to a desired medical facility, for varying reasons. I am glad you and your doctor chose to pursue another avenue, and that you're pleased at this point. We definitely need to advocate for ourselves at all times, even when we feel overwhelmed and confused.

Each member here on Mayo Clinic Connect has their own journey. We can each learn from each other, and also demonstrate what has worked for us. It's so important to remember what works for one may not work for another. We are not in the shoes of another member. For me, I applaud others and their pathway, and shake my head in wonder how everyone comes together to support everyone else! Like you, I don't let my conditions define me!

When is your next appointment?
Ginger