Does anyone else have MGUS?

I am an active 75 year old and I was diagnosed with anemia, than MGUS 6 months later and 18 months after, with Waldenstrom Macrooglobulinema (WH), a non-hodgkins lymphoma. My lab results are all over the place, high and low, but after bone marrow biopsy symptoms were definitive enough for diagnosis. I am on the watch and wait program with repeat of labs every 3 months. Mo treatment yet,

@shannyd Welcome to Mayo Clinic Connect! It's very easy to get concerned when seeing results we weren't expecting. I agree with @loribmt to not go down the rabbit hole of Dr. Google. That's downright scary and can bring unwanted anxiety!

Here, sit with me at the table, a cuppa tea and a few cookies are set up for you. Let's talk about your fears and concerns. Take some time to write out what is most concerning. Come Tuesday, you'll be ready to calmly listen, and ask any questions.
Ginger

Hi @shannyd. You mentioned that your albumin/creatine ration is high. The protein in your urine, in this case, is albumin. It’s not the same protein that is found in patients with MGUS which stands for: monoclonal gammopathy of uncertain significance.

Sometimes, plasma cells can create abnormal proteins. These abnormal proteins are called M proteins, or monoclonal proteins or M spikes. This is not the same as albumin.

It’s really challenging when you get blood results that are flagged and have no idea what they mean! Our minds take us to worst case scenario and often, to Dr Google. Right? ☺️ It this case, it will be better for you to wait until Tuesday to see what your doctor has to say. Have you had a UTI recently?

I am new to this group. Hello to you all! I really appreciate reading all of your experiences and getting different points from you all. I have NOT been diagnosed with MGUS. However, I just reviewed my blood/urine results online and there were a few red flags on there; one of them being protein in my urine, which I have never had before. My white blood cell count is over and red flagged as well, and UR ALBUMIN/CREATININE RATIO was high. My doctor is supposed to call me on Tuesday to discuss my results. I am freaking out a bit. Wondering if it could be some type of blood disorder such as this one... Spike protein, isn't that what the COVID vaccine is? I could be totally wrong but curious...

@beccaboo66 @mikxtr Welcome to you both, to Mayo Clinic Connect. MGUS is not a one-size-fits-all by any stretch of the imagination. Advocating for ourselves is important, no matter the health concern. As we learn to navigate our diagnosis, you will find that having a hematologist/oncologist as part of your medical team is important. It takes a specialist to help us, as a general practitioner usually does not have the details needed to monitor our case.

Feel free to ask any questions!
Ginger

Hi there, thank you for your post. Just out of curiosity, did you and Steve both get the COVID vaccine?

@beccaboo66
You sound like me…so many “ist” appointments. Glad to hear there is very little progression with your MGUS.
Patty

@mikxtr ! Welcome! So glad you chimed in. I’m also glad you are asking for more timely appointments and a referral to a hematologist.
It’s unsettling to get the diagnosis and watching and waiting is frustrating, I agree.
I look forward to hearing about your experience with your new specialist. Do let us know how it goes.
Patty

Hello, everyone. I've been lurking on this chat group for months now. Diagnosed with MGUS this Summer but finally not too nervous to post myself.
Thanks to @pmm and @gingerw for introducing MGUS every time someone new joined. I appreciated those links ... many times.
I've been a little obsessed with the diagnosis: researching and researching and researching. I think it's time for me to just sit and wait, something I've never been good at.
I have IGG lambda with stable M-Spike but both FLCs increased since last test. So I asked for another round of testing in 6 months (dr wanted to wait 2-3 years!) and a consultation with a Hematologist.
Anyway, thanks for sharing your stories, worries, fears and pain ole anger. All of it was appreciated.
Cheers!

I was also diagnosed with MGUS in 2019. My primary Dr referred me to a kidney Dr who in turn referred me to a Hematology DR due to high protein levels in my urine. I did the whole bone marrow test full skeletal scan. I was seeing my Dr every 3-4 months now its every 6-9 months. And of course, my diabetic Dr and kidney Dr every 3-4 months. And my hematology Dr explained my results to where i understood what was going on, so grateful for him. My progression on my MGUS is very slow numbers barely rising if at that.