Diagnosed: MGUS

This MGUS is insidious disease. So my BM had 15% PC. That is the only indication that I now have SMM. All blood work is still abnormal but stable. M protein below 1. Ration low. IgA sky high but it’s always been that way. So no indication showing progression from MGUS to SMM except thru BM. Also cytology studies. FISH analysis. Chromosome abnormalities are all thru the bone marrow. These are vital for treatment and long range assessments for overall forecast and development of treatment. Getting the jump on this disease is how I may get the upper hand in finding this early.

@msh466
I wholeheartedly agree referencing the corporate grade part.

The idea is to get the insurance before one is diagnosed with anything, ie, when still young. They can’t cancel once the policy is in place altho most premiums go up as one ages. It’s not a charity. They are a money making business as all businesses are. I had a policy at one time but didn’t continue it. That’s ok, no one relies on me for my income and I’d rather have the monthly payments for me.

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.

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.

True for auto insurance but not for life—or they would drop everyone at a certain old age. Actually some policies do have a stop age for that reason.

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.

@maddogstormy Good attitude! Each of us has our unique journey. Yes, there might be similarities. It is good to be able to hear what others experience, and it helps us to understand our own situation.

Good luck on getting in to the clinical trial at Dana Farber.
Ginger

I understand what you are going through. It's so helpful to me reading your comments while waiting to see if the results are getting better or worse. Thank you sincerely for your post.

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.