Diagnosed: MGUS

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.

@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?

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.

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

Hi, Patty. Thank you for talking with me. I do have an Oncologist here in Arkansas. I will make an an appointment Monday and let you know when. I struggle with anxiety from time to time so that makes perfect sense. I am very eager to get this appointment set. My oncologist is very on top of things and will get me in quickly. It will definitely put my mind at ease and have some answers. Also, I’m going to discuss with him how he feels about ordering an MRI due to these symptoms. Again, thank you so much.

@pmm
What a blessing! I was taking 1500 mg of Qunol standardized Tumeric for about a year and noticed it helped tremendously with osteoarthritis and degenerative disc flare ups. Then at the advice of a naturopathic physician I switched to a standardized Curcumin product which strangely did not have that same effect even with 3 different brands that I tried. So I am back to Qunol Tumeric and will see if that has any effect on my next labs. If anyone has access to Costco, they have it on sale right now and will also ship it for free. I’m going to stick to that bioavailable brand since it is more effective for me than prescription anti inflammatory drugs! Keep us posted Patty. We all need to hear a success story like yours!

@1oldsoul
Thank you! I’m pleased. My hematologist/oncologist is very skeptical but I did start taking turmeric/curcumin. I take 1000 MG’s twice a day. I started out with 1000 once a day and added the evening dose after having good results the first six months of 2024. My numbers had been inching up and I heard so many accounts of people having good results with turmeric that I decided to try a higher dose. I did check with my PCP and went through all my medication’s with the staff Pharm D at my med center clinic. Finding no interaction issues, I increased the dose.
My latest appointment again showed a drop in my “numbers.”
Other than that, I haven’t made any lifestyle changes nor have there been medication changes of any kind. I’m guessing it’s related to the turmeric/curcumin. I couldn’t wait to tell my oncologist, but he simply shrugged and said he had no objection to me taking it. He’s going to have to see big number data before he gets excited. Bah humbug!
Thanks for asking. My empiricist leanings don’t allow me to get too giddy because it’s impossible to establish cause/effect but my numbers went down with both of my hem/onc appointments in 2024. I am also monitoring kidney and liver function. So far so good.

@magic3ems
I totally understand your reluctance to go back to see the oncologist. It is a scary thing. I’ve been going for three years now regularly and I have to say, I now find my oncology visits reinforce a feeling that everything is under control. With every visit he says“your numbers are stable. There is nothing to worry about, but if they do spike and we find that you have drifted into smoldering multiple myeloma or multiple myeloma, you have to keep in mind that it is very treatable now. We’ve got you.”
It’s also reassuring to me to chat with the patient on connect. Some of the patients who post here have been diagnosed with MGUS for decades. They are living full, rich lives, and they’re not letting this blood disorder define them. MGUS is not cancer, and there is very low risk for progression to multiple myeloma. When you think about it, you are fortunate to be among us who know that we have this blood disorder so we can be monitored to make sure we’re not getting sick.
I’m sorry to hear that you are having these symptoms. So many of us have coexisting conditions and one can’t really attribute any of those symptoms to MGUS without further analysis so you need to get back to the doctor. Whatever it is, it’s not going to get better as your anxiety grows. Anxiety isn’t your friend and will really make you feel sick. That may be all it is.
But whatever it is, it is not going to get better without further investigation.
Were you able to get an appointment? Have you been referred to a hematologist/oncologist? That is definitely a good first step.
Will you let me know that you have scheduled an appointment and when you will go see the doctor?

@magic3ems Welcome to Mayo Clinic Connect! Fear or apathy can drive us to do things that, when we look back in hindsight, make us wonder why we did something, that's for sure! Now it sounds like you have been motivated to go forward and figuring out what is going on, and good for you on that!

As @kayabbott mentioned, most of the time MGUS is asymptomatic, and it will give you peace of mind to figure out the cause for those annoying symptoms. Allergies, blooming plants, medication interactions, the list goes on and on.

I hope your first cousin is addressing their new diagnosis. I will be interested to hear what their treatment plan includes, and also what you find out next week.
Ginger

Regarding your symptoms, it is good to see a doctor ASAP because those could be associated with cardiovascular or other problems and it is best to find out what and how to treat them. Beforehand, write down your symptoms, and if they are constant or vary under different times/conditions. MGUS is considered asymptomatic, although it could hit individuals differently. I've had MGUS for 8 years and it is ramping up, but not at SMM yet and still asymptomatic.