Diagnosed: MGUS

@sandramgus
Hello! Welcome to Mayo connect. We have quite a few members diagnosed with MGUS, myself being one of them. it seems that I tell my diagnosis story a lot so for those of you who have heard it just tune out of my post but please share yours for the new members.
Like almost everybody else, my diagnosis was because I was seeking medical guidance for something totally unrelated. I had been in an auto accident and was rear-ended so I had neck pain. my PCP ordered a CT scan and they found a dark spot on my spine at C2 among other things. That piqued the curiosity of my PCP so she ordered more tests. The bloodwork came back with a paraprotein in my blood, which got me a ticket to a hematologist/oncologist. It was a long wait before I finally got an appointment. The Hem/Onc doc ordered his own specialized testing, and verified that I had MGUS.
By then I had totally freaked myself out by reading everything I could, in my Google searches about multiple myeloma and MGUS. Dr. Google is quite fond of the worst case scenario. My anxiety was sky high and it even raised my white count. I felt sick and I just couldn’t shake a sense of doom. And to top it off, I could not get into the hematologist/oncologist of my choice.
I did finally get into see the new guy and lo and behold, he was really a good match for me. He is not overly reactive and is able to read me well enough to know when I need some reassurance. He’s on top of the literature, and has a great deal of experience, dealing with multiple myeloma and MGUS.
The good news is MGUS is not cancer.
https://www.mayoclinic.org/diseases-conditions/mgus/diagnosis-treatment/drc-20352367
Among other blessings, I get the best preventative care of anybody I know. I started out with quarterly blood draws and scans and now I see my hematologist/oncologist every six months with scans and blood draws. My “numbers” have not really moved. They have crept up a little but nothing I am concerned about. Also, I try to take good care of myself and, try to eat, sleep and live healthy. Last, but not least, I found the Mayo Connect community which gives me support, camaraderie, and cutting edge information/research from the Mayo clinic.
Can you tell me a little more about your current situation? Have you found a good hematologist/oncologist? If so, how often will you go in and what is the plan for your care?

Hello, Patty:

I'm sharing my K/L ratio values. They fluctuate, but the trajectory is to inch upwards.

My current Hem/Onc does not seem to think it's anything to worry about and we are just watching it with quarterly lab testing for K and L free light chains and their ratio, CBC, calcium, creatinine level (kidney function). I asked for bone marrow biopsy and/or scan. He said I did not need that.

Prior to the Hem/Onc I'm seeing now, I had seen another one when I was on a different insurance, and he had said the same thing.

I'm open to your thoughts and suggestions.

Thanks.

Date and Value Value Normal Range

Feb 10, 2025 0.26 to 1.65
2.73High

Oct 30, 2024
2.29High

May 31, 2024
2.05High

Feb 17, 2024
2.11High

Aug 30, 2023
2.21High

Feb 19, 2023
2.35High

Jul 28, 2021
1.57

Hello, Patty:

I'm sharing my K/L ratio values. They fluctuate, but the trajectory is to inch upwards.

My current Hem/Onc does not seem to think it's anything to worry about and we are just watching it with quarterly lab testing for K and L free light chains and their ratio, CBC, calcium, creatinine level (kidney function). I asked for bone marrow biopsy and/or scan. He said I did not need that.

Prior to the Hem/Onc I'm seeing now, I had seen another one when I was on a different insurance, and he had said the same thing.

I'm open to your thoughts and suggestions.

Thanks.

Date and Value Value Normal Range

Feb 10, 2025 0.26 to 1.65
2.73High

Oct 30, 2024
2.29High

May 31, 2024
2.05High

Feb 17, 2024
2.11High

Aug 30, 2023
2.21High

Feb 19, 2023
2.35High

Jul 28, 2021
1.57

I've had MGUS for 8 years and my early K/L ratios were similar to yours, not far from baseline. They started ramping up about 3 years ago and my Kappa is now about 300 and Kappa/Lambda ~28. They still go up and down a bit, but my oncologist told me that I'm fine until my Kappa is in the thousands (hopefully that is the scientist and not the mother hen speaking). I had a baseline BMB 8 years ago and my deranged plasma cells were ~5%; the BMB last summer had 15%, which technically is SMM level, but plasma cells are sticky and clump together, and I have no symptoms from MGUS, so he still has me at MGUS. Even at my level, the chance of it morphing to MM is still low.

I hope you can relax with your diagnosis as hard as it is. All of us with MGUS have the anxiety of waiting for test results, I wonder if it's worth knowing sometimes.

I was diagnosed with MGUS last year while taking tests for neuropathy in my feet. I was also told not to worry as the amount of IGGs was low risk. So in January, I had my 1st comparison tests, including the serum electrophoresis test that first diagnosed me. It showed no monoclonal gammapathy! My Hematologist wants to test me in 6 months instead of 3, but she cautioned me it could show next time and that it was so low it did not register. I'm cautiously optimistic and wonder if anybody reading this has also "improved" results? My kappa/lampda still shows an uneven ratio, but improved since last time. I have done nothing different except stopped eating strawberries and started eating pears, resolved a couple of personal relationship issues, and switched my statin drug to every other day. I often wonder if statin drugs and Moderna vaccine can affect results? My Hematologist says no to both.

I also wanted to say I had to see a Nephrologist too because my kidney function (Egfr) was 55 and I had protein in my urine. This too has resolved itself and all 12 kidney panel tests, came back to normal, I get retested in a year.

I have no idea if this helped, but thought it wouldn't hurt to pass on, that you might see improvement without any intervention. Please share if your MGUS results improved, or if you've had a similar experience and what happened on the next test.

Hi Patty, thank you so much for sharing your detailed experience. I don't take it lightly. I had to start avoiding google too, and it was just too much information to sift through.

Like everyone else, they found out I had MGUS because of something unrelated; in my case it was just my annual check up. Since I'm at the beginning of this my next appointment is in 3 months. After that I suppose my doctor will have me come every 3-6 months. I don't have a hematologist/oncologist at this point. But I'm trying to get all the information I can so that I can go into this prepared.

Ironically, my longest illness has been migraines, for over 40 years. We *just* got my migraines under control about 2 years ago. I went from having 3-5 migraines a week to 1-2 a month. This is a *huge improvement* because I work full time and I'm always running around with my kids.

Now that MGUS has been diagnosed I'm really hoping that it doesn't become multiply myeloma, because I'm tired of being in pain and tired. I can't imagine my spine and skull having pains. It's scary to me.

Thanks for writing!

@health95
thanks for the update. My numbers fluctuate a bit but they haven't changed that much in three years since my diagnosis. My oncologist/hematologist always says the same thing. "I'll see you again in six months, (started with quarterly) but this is MGUS. Remember if it should drift into numbers that indicate multiple myeloma it is very treatable."
I can live with that.
You can't really pin him down as to what numbers would be concerning to him but I think that varies from patient to patient. They look at what coexisting conditions you might have and evaluate risk by your age, general health and stamina in addition to your lab analysis and body scans (do ask about those).
I know a lot of of our members have gotten a bone marrow biopsy on the front end of their diagnosis. I opted not to do that after looking at the data and talking to my physician. Many are taking a more conservative approach to bone marrow biopsies and my physician and I agreed that if my numbers started spiraling I would get one. So I think your doctor is thinking along the same lines but if that's concerning to you have another discussion with him or her. No invasive procedure comes without risk although having read about the bone marrow biopsy, it seems as though the risk is low.
I think it's concerning to many patients that there is no treatment for MGUS at least initially. I look at it this way… I get the best medical preventative care of anybody that I know and I don't have to suffer a chemical intervention at this juncture. I may in the future, but for right now I'm living my life and enjoying my friends and family post and hope to continue to do so for the rest of my life.
Are you feeling less stress about the diagnosis?

Thanks for your input. Much appreciated.

Just to make sure that I understand, your K is 300 and your L is 28? Or is your L -28? I've never read of an L at a minus number, so I'm not sure if I misread.

Regardless, be an active participant in your own treatment.

Be well.