Does anyone else have MGUS?

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!

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 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?

@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/

He called me back and says he's watching it and my next adventure will probably be a bone marrow biopsy. I also have thrombocytopenia and the low platelet count concerns me more than MGUS.

@steveutnv we are all so different with different coexisting conditions. The question that you are asking, I believe, is what is the threshold for concern about your blood analysis? That is an excellent question for your hematologist/oncologist. At what level would the concern rise to a level where your physician would consider treatment? What might that treatment look like?
It is sometimes very challenging to get a doctor on the phone so you might try to get a telehealth appointment which he or she can charge for… That sometimes makes the time that they spend talking to patients more palatable.
Will you let me know how this goes for you?