Medullary sponge kidney desease

The story of Cathy

I’ve been sick since my first son was born. I suffered from kidney and bladder infections that lasted for weeks. I’d go to the doctor’s office and they would put me on antibiotics. Sometimes they would work and sometimes they would put me on another round. The pain was horrible. This went on for years, about 20, then one day I went to school with my youngest son about six years ago, I called my doctor’s office and told them I had finished my antibiotics three days earlier but it hadn’t gone away. I got a message saying that if it was that bad I should go to the emergency room. I went home and took care of my son who was only four. When my husband got home I told him I would wait until morning and see if I felt any better. That night at 3am I woke him up and told him I was going to the hospital listen for Jordan. When I got there they gave me a shot of something for the pain and the er doctor said he wanted to run a CT scan. I had never had one before but I just wanted to get better and was happy someone cared enough to try to explain what was wrong. That night I was diagnosed. There wasn’t much information about MSK. My doctor admitted she’d never heard of it and had just looked it up on her computer five minutes earlier. Since then I’ve had good doctor’s and bad one’s. I’ve been told that my kidneys had no nerve endings and I shouldn’t feel any pain. I’ve been poked and prodded ,but just put on medications to mask the pain and anxiety. I’ve had 11 tumors removed during a total hystorcetomy. Still waiting for someone to find an answer.. I’m still waiting . I have to go find a new doctor again because of insurence. Hopefully this one will have heard of our desease. Hopefully this one will listen to me. I’m so tired of not being heard. I just want the same thing everyone else does. To live life in some kind of comfort. There’s no answer for us. Pass stones if we can or wait.