Diagnosed: MGUS

@lbhayes
Welcome to the Mayo Clinic Connect.
It certainly a chicken or egg situation to contemplate. There is a MGRS. I suspect the renal significance is when they can connect the dots between the M paraprotein and renal decline. I will post some information about it for you. It’s not easily available to me at this moment but I can remedy that in a few minutes.
Generally speaking, the hematologist/oncologist will do a whole body scan to look for bone lesions on a regular basis. If you have questions about bone pain or you are worried about progression, I would talk to your physician and certainly not wait for a year. I don’t know about you, but I always forget my questions when I go to see my doctor. I have begun to write them down in a notebook that I carry with me when I go for my doctors appointments.
If you feel dissatisfied with your medical care, you can always get a second opinion. This is a complicated blood disorder and you’re right to ask all your questions and ensure that your physician is able to connect all the dots between your symptoms and their etiology.
I’m sure some of your questions will be answered when you see your nephrologist.
Many of us have coexisting conditions that don’t have anything to do with MGUS. But the MGUS can certainly complicate things and the connection, or lack there of, has to be ruled out.
I have learned how to advocate for my health care. I have learned to be the squeaky wheel, but not alienate my treatment team. I look at my PCP and those specialist that I see as partners with me in deciding what is right for me treatment wise. I listen to them carefully, I ask lots of questions and I do my own research if it’s something I’m concerned about.
It’s also really nice to be connected through this forum as there are many people here who have already gone down the path that I am traveling and have good practical counsel for me. I was diagnosed with MGUS only three years ago and there are people “here” who have been living with MGUS successfully for well over a decade.
I’m really glad you found us. Do you feel comfortable in calling your doctor and asking for a telehealth appointment or a phone call so you can ask all your questions? If so, would you let me know how that goes for you? I’d also like to know what your nephrologist has to say if you’re comfortable with sharing that information.

I didn't want to start a new thread for something similar to your post-so I apologize and don't mean to be "hijacking" your post. 🙂 What were your markers/blood levels /urine screening, etc. that resulted in a MGUS diagnosis? Currently working my way through some tests and such and sort of feel that may be the road we're heading down. Like others, it started with visits to the dr. for something else-my PCP referred me to a pulmonologist since I have had Covid 5 times and keep having low sats. CT of my chest showed micro-nodules and some inflammation. Sats drop occasionally to high 80s and upper 90s, but will then right themselves in a bit. I have had lots of fatigue and hip pain. Also frequent kidney stones. I've had iron deficiency anemia for over 15 years, and my latest tests show that my iron is 25, Transferrin sat is 5%, TIBC is high at 457, and ferritin is low at 10. (All typical for iron anemia.)
However, the latest batch of tests show a few oddities that make me wonder if MGUS is on the horizon:
A UPEP 24 hour urine showed my protein is 279, which if I am reading online correctly, is a bit high.
Albumin is low at 26.7% (From what I read, 50-60% of your urine protein should be from albumin?)
Beta Globulin is high at 33.2%, my IgA is 499 (but down from 537), my serum immunofixation electrophoresis showed an increase in the beta fraction with a beta globulin of 1.4 g/dl.
IgG subclass 3 is low at 14, my albumin is low at 3g/dl,
From what I've read a high IgA and low IgG3 can mean possible plasma cell or immune dysregulation.
With the beta globulin spike on urine electrophoresis and the moderate proteinuria, along with low albumin, along with the iron issues, elevated platelets, fatigue, etc. I am wondering if anyone else had similar issues?
I realize MGUS isn't cancer and just requires careful watching but I tend to worry less when I'm well informed. Thanks for any info, and well wishes to you all on your health journeys.

I didn't want to start a new thread for something similar to your post-so I apologize and don't mean to be "hijacking" your post. 🙂 What were your markers/blood levels /urine screening, etc. that resulted in a MGUS diagnosis? Currently working my way through some tests and such and sort of feel that may be the road we're heading down. Like others, it started with visits to the dr. for something else-my PCP referred me to a pulmonologist since I have had Covid 5 times and keep having low sats. CT of my chest showed micro-nodules and some inflammation. Sats drop occasionally to high 80s and upper 90s, but will then right themselves in a bit. I have had lots of fatigue and hip pain. Also frequent kidney stones. I've had iron deficiency anemia for over 15 years, and my latest tests show that my iron is 25, Transferrin sat is 5%, TIBC is high at 457, and ferritin is low at 10. (All typical for iron anemia.)
However, the latest batch of tests show a few oddities that make me wonder if MGUS is on the horizon:
A UPEP 24 hour urine showed my protein is 279, which if I am reading online correctly, is a bit high.
Albumin is low at 26.7% (From what I read, 50-60% of your urine protein should be from albumin?)
Beta Globulin is high at 33.2%, my IgA is 499 (but down from 537), my serum immunofixation electrophoresis showed an increase in the beta fraction with a beta globulin of 1.4 g/dl.
IgG subclass 3 is low at 14, my albumin is low at 3g/dl,
From what I've read a high IgA and low IgG3 can mean possible plasma cell or immune dysregulation.
With the beta globulin spike on urine electrophoresis and the moderate proteinuria, along with low albumin, along with the iron issues, elevated platelets, fatigue, etc. I am wondering if anyone else had similar issues?
I realize MGUS isn't cancer and just requires careful watching but I tend to worry less when I'm well informed. Thanks for any info, and well wishes to you all on your health journeys.

Hi again, so I have the results from my recent labs and while numbers continue to increase or decrease in the wrong direction I am still Smoldering. I am currently waiting for a clinical trial to begin at Dana Farber for a bispecific treatment. I have continued to educate myself and have found this thread to be really helpful and the other threads that folks have here on Mayo connect. I now know a couple of people who are in treatment with very short notice, and have heard other people talk about receiving an active Multiple Myeloma diagnosis out of the blue and I am reminding myself that my situation is very different, I have this time now to pay attention to, I am not active, I am not in treatment, I am closely monitored, by skilled doctors, and practitioners. And if things change I will be prepared.

Hi again, so I have the results from my recent labs and while numbers continue to increase or decrease in the wrong direction I am still Smoldering. I am currently waiting for a clinical trial to begin at Dana Farber for a bispecific treatment. I have continued to educate myself and have found this thread to be really helpful and the other threads that folks have here on Mayo connect. I now know a couple of people who are in treatment with very short notice, and have heard other people talk about receiving an active Multiple Myeloma diagnosis out of the blue and I am reminding myself that my situation is very different, I have this time now to pay attention to, I am not active, I am not in treatment, I am closely monitored, by skilled doctors, and practitioners. And if things change I will be prepared.

Hello. I am new to SMM since march 25 and have my first follow up appointment with the doctor next week. MRI marrow scan was negative thankfully. I am having increased burning neuropathy in both hands and some thing new that feels like a very low level deep ache throughout my body. As though my bones were swollen. And I am extremely fatigued. I have been offered a clinical trial for Linvoseltamab to begin treatment. The MGUS is now “significant”. Smoldering is a strange word and I can’t help but imagine I am slowly falling deeper into this new kind of hell. I have so much and so many supporting me. Great doctors. Loving family and friends. Getting educated and maintaining balance is super challenging. I did have a great conversation yesterday with someone at MMRF about beginning treatment so early. It is really helpful to read all of these threads. I remember the years I had MGUS and sure wish I was still there and I remember one thought I had. Enjoy this while it lasts. Just in case it does progress. I can tell my self the same thing now. Enjoy this while it lasts. Just in case things change.

I only had life insurance when my kids were young. Once grown and moved out I discontinued it. My wife and I hade money so no need for life insurance. But all insurances always goes up. Regardless if you file no claim. Have no health issues. Have 20 year old junkers for cars. They jack up rates. So not a fan of insurance companies. Oh I know they’re in the business to make money. they also have the power to drop your policy.

I have smoldering multiple myeloma. Not sure how long I had MGUS before it progressed. Found totally by accident. M Protein is 2.0 and 15% plasma cells in bone marrow. Many do not progress past MGUS. This is a condition they will have the rest of their lives. Get tested often. Follow ups often and wait and see what develops if anything. No symptoms or illness with MGUS. So catching it with blood tests is usually by random. I too was taken aback seeing Hemonc doctor. Felt overwhelmed like this is it. But it’s been stable now for over a year. No progression or lesions and calcium normal. Abnormalities in M Proteins. Super high IgA. But they haven’t moved much. Blood work is due in May. Always a tense time waiting for results. A lot of this is mental. It’s a roller coaster of emotions.