Hi Agatha,

I am so happy you are asymptomatic now! It would be indeed rare for someone with MGUS related PN to have the symptoms to be so mild that without intervention and/or lifestyle changes over time, you do not notice them or that they have not gotten worse. You did not say what your EMG or nerve conduction tests revealed, but whatever they said, I am happy you are one of few people I have ever read about or known with MGUS-caused neuropathy who, over a long number of years had their symptoms stay the same or where the symptoms actually dissipated such as they were barely noticeable.

There are always exceptions to the rule and everyone's body is different, but congratulations!

@agatha679 Like you, I had many tests done for the neuropathy in my left leg/foot. They were looking at spinal issues, and all. In the end, it is caused by the nerve involvement of the underlying MGUS that morphed into active myeloma in short order. [I tell people that being an over-achiever, I just couldn't let MGUS lay dormant like it normally does. I was an active myeloma patient within 18 months of my diagnosis of MGUS.] Yes, the neuropathy continues, and like you, the outside of my left foot is especially affected. I use a cane to help ensure I don't lose my balance. I tried Gabapentin for a while, but the therapeutic doses are more than my kidney issues can handle, so I quit it It is more of a "well, it is what it is" situation for me at this point.
Ginger