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Medullary Sponge Kidney Disease Complication

Posted , 2 users are following.

DanieRN
DanieRN

Hello, I'm hoping to learn more about MSK and possible symptoms. In 2013 I passed 2 stones and was told I had multiple small stones in each kidney. I was instructed to drink more water. Fast forward to 2015 (29 years old) I broke my back when I slipped on my stairs. The compression fracture kept collapsing despite being in a brace for 8 months. I saw a bone health specialist who diagnosed me with osteoporosis. I was put on a medication called Forteo to build my bone and hopefully cure the osteoporosis but the side effects include kidney stones. I was put on hydrochlorothiazide to help flush calcium and prevent further stone formation. Later that year I was having mild to moderate flank pain and had a renal ultrasound and that's when I was diagnosed with MSK. Luckily I haven't passed any stones since 2013 but they have grown in number and size so I feel like a ticking time bomb. For three weeks now I've felt symptoms of a bladder infection with low back pain. I will be seeing my doctor soon but I'm trying to find anyone who can relate to my symptoms and give recommendations or just share their story.

Thanks!!!

0 likes, 3 replies

3 Replies

  • debra3747
    debra3747 DanieRN

    Posted

    Hi 

    I have MSK and have many blockages and operations to get stones removed 

    I have it in both kidneys . 

    I have had 16 stents in left kidney and right one I have had 3 

    MSK is a horrible illness .calcium salts form in medulla part of the kidney which nothing should grow there 

    Our kidneys filter different so it holds onto urine and forms stones.

    If you look at your CT scan they look like sponges and look like scrambled eggs  

    Good you haven't had many issues with stones , You might never get a blockage or issues.

    you need to find a urologist who understands this condition not all urologist get it.

    I get cleaned out regularly as I have everyday kidney pain but also I know when a stone is moving as I get sick I can't eat and kidney spasms and my bladder 

    I ask to be cleaned out before I get blocked as I can't pass a 3mm stone anymore. Sometimes I don't get done in time and get blocked 

    I've had up to 70 plus in both kidneys and it's not nice when they block as you bleed and get very ill and can go septic.

    Find a good urologist so they can look after you 

    Good luck 

    • DanieRN
      DanieRN debra3747

      Posted

      Hi Debra, 

      Thanks for your story. It's nice to hear from someone who has dealt with MSK a lot more than I have. I see my urologist on Thursday, haven't seen him in 4 years. I do feel an internal pressure from my kidneys (especially my right) and I do get that weird UTI pain in my bladder every once in a while. I'm scared that he'll want to do a lithotripsy, not scared of the procedure but the stent. I've heard the stent is quite uncomfortable. Do you take anything on a regular basis to help dissolve or prevent stone formation. I'm a nurse and was told today that Magnesium Chelate (over the counter supplement) is very good for stones. Thanks again! 

  • debra3747
    debra3747 DanieRN

    Posted

    Hi 

    Stents are very uncomfortable.

    If you can stay clear from being operated on the better. I get cleaned out as I get blocked a lot and pain gets to much. If I could stay clear from stents I would they aren't nice at all and hear it's worse for males. (Hate to be the person telling you that)

    I refuse to take pain killers I much prefer to not feel out of it and just deal with the pain. 

    I don't take anything for stones as I have had many 24 hour urine tests and all come back showing that it does not matter what I drink or eat I will form stones. I drink my water with lemon in it but does nothing to stop them.

    But everyone is different and maybe request a 24 hour test and see what yours show.

    No matter what we really do our kidneys just built different and filter different so stones are just part of us.

    It's a hard illness and can be very painful but we need to keep moving forward 

    Debra 

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