So sorry to hear it took so long for you to get the proper diagnosis. It took me 4 years and that was frustrating. 10 years is terrible.
You are on the right track by seeing a nephrologist. They will hopefully evaluate your urine to see why you are making stones. The MSK is a birth defect. It can't be fixed, but you can try to prevent more stones.
Some people, probably most, that have kidney stones embedded in the kidneys have biofilm infections around the stones. These do not show up in a urinalysis or culture, but are just bad enough to make you feel sick and achy. I take daily antibiotics that have helped me tremendously.
I am so sorry to hear that and am sorry I just do not get in here very often. I am now a single mom and the posts never come to my e-mail so I get lost. PLEASE CHECK OUT THE HEALTH PAGES... and google MOARKIC
my personal e-mal address is on there and you can click on the link for MSK for a lot of articles and info too.,
go to the healthpages on the top right hand side. Here is the link:
If you go to the healthpages, look for an article on MSK and pain, treatment options. There is an article that lists the treatment protocols
you also want to look at the article on biofilm infections and MSK that will help explain some of the issues with you... hang in there and please read through many of the older posts...you will gain alot of knowledge
How are you doing? Thinking of you :)