Does anyone else have MGUS?

@coug42, you may also be interested in these related discussions:
- Diagnosed with MGUS/Amyloidosis
https://connect.mayoclinic.org/discussion/diagnosed-with-mgusamyloidosis/
- Diagnosed with both multiple myeloma and amyloidosis
https://connect.mayoclinic.org/discussion/multiple-myelomaamyloidosis/

I was diagnosed with MGUS four or five years ago, and have been seeing the same hematology practice since then. He tells me everything is stable, but I just looked at my blood work from a month ago. I see my recent free kappa light chain reading (52.8) is way higher than the reference range 3.3-19.4. Six ago that reading was 54.0 so at least it's down a bit, but a year ago it was 46.0. I left a message for the NP I see to call me about it but haven't heard back - he didn't mention it at all in my recent visit. Should I be concerned?

I have had MGUS for 4.5 years. The strategy has been to monitor it with blood tests. The changes of it become a cancer is 1 to 2% per year. How ever mine just added Amyloidosis to the MGUS. It’s a bit more of a problem, but not uncommon for MGUS to add Amyloidosis. Talk to you doctor to be sure he’s watching for this, he probably is. My showed up first when I had carpal tunnel issues in both hands. It is not unusual for people with MGUS to have this because Amyloidosis is a build-up of small proteins similar to the pieces of protein associated with MGUS, just a decent question to ask your doctor about. Hope things go very well for you. It’s possible you could have MGUS until you pass away from something else and it may never cause you a problem.

I started with pheriferial neuropathy in early 2018. After a few years I got a new Neurologist. He tested and retested a few things and said it's SFN. I been taking Pregabalin in 2018. Just 2 months ago, my doctors PA orders a few other test and one was kappa/lambda lightcell serum levels. My kappa was on the high side but did not seem that bad. That is when I did some research on the kappa/lambda tests and saw MGUS. Then today I saw my family doctor and asked. He said many people can have high kappa levels but no blood Cancers. I also saw the M Protein test and it was negitive. I will see my Neurologist in the fall season for another followup. Oh ya one more thing, I am a liver transplant patient since 2000. Has a second transplant in 2017. The first Neurologist said my neuropathy is from the immune medication, Prograf/Tacrolimus. My second doctor never confirmed this. I asked my Heptologist if we can reduce my Tac meds and we did that since I never had an organ rejection episode. So who really knows what the heck is going on!

@harley22 and @coug42 It's not unusual to have a protocol of watch-and-wait when it comes to MGUS. Having a knowledgeable hematologist oncologist is crucial, in my humble opinion.

Yes, there is a lot of information out there from Mayo Clinic, and also the International Myeloma Foundation [myeloma.org] It is not to scare you, but educate you. MGUS does not always progress to the next stage, and if it does, it can take several/many years. An educated and informed patient is always going to be in better position to address whatever may come in the future, and and handle what is going on in the now!
Ginger

These “ologists“ do control our lives. Do they not? I have neuropathy, which is mostly the bottom of both feet. It causes me to be a little wobbly and it’s painful. It has not progressed since it started about four years ago. It really predated my diagnosis.

@spmreads1
My MGUS blood analysis has been very stable since I was diagnosed three years ago. I had quarterly blood draws for the first two years along with semiannual scans. Last year we went to every 6 months for draws and scans. So we hold steady.
I’ve been waiting to see a neurologist for over a year now. I guess I’m going to have to go outside of my provider group.

The PET scan didn’t “light up” any place except in my hiatal hernia, which is good news. He will check my bloodwork every three month monitoring it for any change. He summed it up by saying that I was at the lower end of low risk for my developing Multiple Myeloma. I’m seeing a GI to have the hiatal hernia checked out, but he’s not concerned that it’s anything to be concerned about. So all in all, I am at peace with the plan he’s put into place and go on with life as it is. I hope all of you remain well!

How are you/ have you being treated for MGUS and/or the associated neuropathy?

I have seen a rheumatologist, neurologist, dermatologist, and now a hematologist. There are far too many ‘ologists’ in my life right now. Where is you peripheral neuropathy showing up? Mine is complete numbness of my left foot and partial numbness in my right. I originally went to my GP bc the numbness in my left foot was getting worse and moving up my shin. Then irregularities showed up
in my bloodwork and 4 doctors later, here I am.