Has Anyone Every Gone To The Mayo Clinic For MSK?

I found out 14 years ago that both of my kidneys were Medullary Sponge Kidneys. I have had multiple lithrotripsies. I have a very similiar story to many of you. About the exact same time I found out that I had MSG my blood pressure was so high several times that I was in the stroke range. I am a thin person that exercises and it just didnt' make since that I was 30 and having blood pressure problems. My doctors at the time didn't even make a connection to my BP and MSG! Very frustrating!!

I am on a "water pill" that has controlled my BP and is also supposed to help the MSK problem. My doctor also has prescribed Urocit-K but that is so hard on my stomach. I still am producting stones.

I just wondered if anyone has ever gone to the Mayo Clinic regarding this disease. I had surgery last month to remove my ovaries and I had so much scar tissue on my right side that the doctor could not even find my ovary(even though it had shown up with huge cysts on an ultrasound). My right kidney is the one that has had more lithrotripies on it. My OB recommended that I go to the Mayo clinic because some of that scar tissue could be from having so many procedures done on that right side.

Anyway, I'm glad that I found this site. Not many people can understand the pain and frustration that we go through. I would love to find answers for a solution. I drink a TON of water, I eat a low protein diet, I limit my oxolate intake...just hoping someone else has an idea.

I'll appreciate any advice. Thanks!
gopokes gopokes
41-45, F
1 Response Jan 22, 2013

What is your diet exactly? I have recently been diagnosed and always am managing painful urination. I manage with uvi Ursi