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I am a 50 yr old female and I have been diagnosed with Medullary Sponge Kidney

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Guest
Guest

I am a 50 yr old female and I have been diagnosed with nephrocalcinosis from medullary sponge kidney only in the last 6 months yet I have been suffering for a good 4 years. It started out with repeated UTIs. I was given a sulpha antibiotic and had a severe allergic reaction. It developed into Stephen Johnson Syndrome and hospitalized for 4 days. Then the stones developed and I averaged 2 ureteroscopies a year with UTIs in between. Things are getting worse rather than better. We are only 6 months into 2006 and I have had 4 ureteroscopies. The pain is now chronic and my urologist is at a loss for what to do next. We have followed a low oxalate diet for the past years. Breakfast includes potassium citrate, calcium citrate, magnesium, iron, Vitamins C, B6, B12. I have a full range of drugs for pain. It looks like I've done everything there is. I don't like the prospect that there is nothing more to do. It has to get better.

[i:1b5763b5fd]This message was automatically imported from the original Patient Experience[/i:1b5763b5fd]

0 likes, 3 replies

3 Replies

  • Guest
    Guest

    Posted

    Hi There, Im so sorry to hear of your troubles, I too suffer with repeated stones and long term UTI'S... I am 37 years old and have had this condition since birth!

    My Consultant has now told me to drink lemonade 1.5 litres aday and 1.5 litres of water... I am on a constant dose of antibiotics and nothing seems to work...

    I wish I had some answers for you, but I dont im affraid.

    Wishing you well

    Sarah:wink:

    [i:e8877127f2]This message was automatically imported from the original Patient Experience[/i:e8877127f2]

  • Guest
    Guest

    Posted

    I've had MSK all my life with no symptoms and maybe 2 UTI's ever. Trainer suggested taking magnesium citrate for reflux, and after a few days of taking one tablet per day, I started getting severe pain in the right back and side - sudden cramping with movement. I stopped the supplement and the pain went away. I tried the supplement again and it came back for a day. I find this very strange since magnesium is recommended to avoid kidney stones. So look at your reaction to magnesium...
  • Guest
    Guest

    Posted

    Hi, I was diagnosed with MSK at the age of 27 - 13 years ago. Suffered from multiple stones and now await transplant. The situation was eased greatly by drinking 3-5l water per day, cutting out tea and coffee and foods high in purines - strawberries, and single stoned fruits
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