Does anyone else have MGUS?

My UTIs have gone on since 2015 and fortunately, I am largely asymptomatic. I have tried antibiotic and natural treatments over the years and have given up because they have caused all sorts of chaos in my already overly sensitive digestion. I wouldn't be surprised if the UTIs were connected with my iron deficiency (treated with iron supplements) that was found in 2015 too and my MGUS diagnosis in 2021.
Heavy duty radiation and chemo treatements dating back in 1980 (for endomentrial papillary carcinoma) at age 40 probably didn't help either.
And finally being raised in my family's flower business in the 1950s when chemicals were widely used just added even more to my toxic load.
Gee, I am darn lucky just to be alive at 76 although I have my problems and the MGUS checks "freak me out" every 4-6 months. (Now, I just hope my husband recovers from whatever immune problem he must have --- I'll post about that after Monday when we see ANOTHER specialist on a more applicable thread. )

Not sure if this would help you at all but I have a friend who has found relief from her UTIs with this product from Uquora. I’ve not tried it personally. But it may be something worth trying or running past your doctor to see if you can use the product. 🙂
https://uqora.com/

I was diagnosed in 2008 with neuropathy, later Poly Neuropathy. 2018 MGUS.
To put this in some perspective, I was a Combat Vet in Vietnam, 66-67. Patrols on the rivers and canals with the thick jungle canopies that lined both sides, gave the military their reason to use Agent Orange-aka Dioxin 2-4-D that, unfortunately, rained down on the troops with far reaching medical consequences!
Fast forward too today. the Veterans administration is now treating Vets for eighteen (18) presumptive decease's produced from the effects of contact with AO herbicide! Of that eighteen, I now have seven (6) not including the results from the lung biopsy done three (3) weeks ago and is still under review as it wasn't the specimen that they had hoped for! At seventy-seven this isn't what you were expecting from the end-days! My conclusion is that I have dealt with this long enough that I am a firm believer that there is no cure nor lessening of various malady's because they have come at us too fast and too well equipped!
Thank you,
Rick

Hello Rick, thank you for your service. I’m sorry that you are now dealing with so many service-related illnesses. The magnitude of the impact of Agent Orange exposure isn’t reported on enough. I had no idea there were 18 diseases associated with exposure. It’s horrific.
My interest in your comments about poly neuropathy was piqued as many of us with MGUS are dealing with neuropathy. I have type 2 diabetes but it is well controlled. For my medical providers, the Diabetes is the path of least resistance when they connect the dots between symptoms and disease. I also have MGUS and Celiac disease which are linked to peripheral and/or poly neuropathy. Unfortunately, although it’s a major contributor to poor quality of life, they don’t seem to know what to do to treat it.
Perhaps it is, as you say, a well-equipped adversary.
Let us know about the report from your biopsy and how you are faring.
Patty

Hello Harley,
I’m glad you joined the discussion. I’m learning a lot about MGUS from our fellow travelers.
It sounds like your medical provider is confident that your MGUS is stable and therefore he or she is seeing you twice a year. Did you find a good hematologist in whom you have confidence and are all your questions answered about MGUS? I find that having a provider who is an expert in Multiple/Smoldering MM is essential. It took me a bit to find mine.
Thanks for sharing your participation.
Patty

Hey Rick, thanks for your service. I also served in Viet Nam ‘66-67. I’m currently dealing with prostate cancer and receiving treatment for MGUS that has stepped up to Waldenstrom disease. Both on the presumptive list issued by the VA.
Never say never just keep on fighting.
Best to all!

Saw gyn and am now back on estradiol creme twice a week. Seems to be working. Not thrilled with being on hormonal creme again, but it's better than the constant uti's! We'll see!

Diagnosed with MGUS December 2022. I'm very low on the light chains and ratio between the 2 is good so seeing my hematologist every 2 months and blood work I feel it is under control. I am 72.

You are very lucky to have someone who is interested enough to follow-up. My oncologist just sent me on my way and told me I’d get my chemo when I break a bone. She didn’t even ask about any of my symptoms either. I’m so glad that everything seems to be under control for you.

@nathangolden. Quite frankly, I think it’s time to find another hematologist oncologist. 😳 Do you have any followup appointments with this doctor??