I am trying to find someone else who has this condition or even a medical professional who has information about it. I was diagnosed with Medullary Sponge Kidney a few years ago when I was having extreme back pain. The doctor sent me for a CT and an MRI. The CT scan showed this condition, but the MRI showed that I also had a herniated disc around the same area that the kidneys are. So, it was difficult to detect where the pain was coming from. My doctor sent me to a urologist who knew NOTHING about this condition.
Now, a few years later, I am having extreme pain, low grade fevers, and one urinary infection after another. I have been on antibiotics for 6 months now because as soon as one infection is treated, another comes up. I'm up all night because of frequent urination. And tests have shown blood and protein in my urine most of the time.
I guess I'm wondering if this is something I should be concerned about at this point. The symptoms seem to get worse over time, and I'm wondering if I should be concerned about long-term damage. What kind of doctor would know about this condition, if the urologist doesn't know anything?