Re: Medullary Sponge Kidneys

Hi I was diagnosed with meddullary sponge kidney in april this year when i was admitted to hospital with the most unbearable pain i have ever suffered.I only have it in my right kidney, the left one is perfect. Since then i have spent 11 weeks in hospital where i was given CT scans, x rays, renagrams, IVP scans and lots of bloods taken. I have had two 7mm stones removed surgically and had a nephfrostomy tube fitted for a few weeks because i had a blockage with another stone and ended up with an infection in my blood stream. The tube was removed quicker than planned as my consultant was sure there were stones stopping it from draining properly. I have never been pain free since April and my consultant keeps saying that I should only have pain if there are stones passing or have a blockage or infection but i am just out of hospital again last week and am on a slow release morphine twice a day and taking morphine in tablet form for breakthrough when the pain is really bad. I have pushed my consultant into going up into my kidney with a telescope because he wont repeat any of the scans or x rays any more because of exposure to the radiation. i am at the end of my tether with this disease and there does'nt seem to be anything except morphine, which makes me like a walking zombie, to help people with this condition. I am not willing to stay on the morphine for more than three weeks as i have no quality of life and then again i have no quality of life being in pain and lying in the hospital for weeks.
How badly are you affected by M.S.K and have you heard any good stories about it because i can only find stoires like mine on the internet.Do you know of anything to reduce the formation of stones? x
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