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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!
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No one really knows what is going on.
There is so much we have yet to learn about MGUS.
Thankfully, as more research is done and information is collected, there are more conditions related to MGUS and free light chains about which hematologists are aware.
I am pleased to see over the last decade since my own MGUS dx recognition of potential renal involvement, neuropathic complications, and susceptibility to infection. Of course these conditions do not affect the majority with this plasma disorder but they can be present or develop.
More often I am hearing about these possibilities along with the statement that MGUS is benign and needs to be monitored through SPE lab work, rather than MGUS is “just” a benign condition commonly found in almost 4% of the population and rarely develops into anything malignant.
This has been affirming for me personally as I was in my early forties when Dx and I have experience the progression of peripheral neuropathy.
When even the neurologist insists that these two things are NOT related, I have felt frustrated.
My hope is that research and a knowledge base will grow and that awareness of connections to systemic problems we may experience in our bodies will be acknowledge and eventually even treated!