Medullary Sponge Kidney Disease (MSK) Community
Im desperate, i need some help
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Im desperate, i need some help

Hi all, I'm hoping some of you may have some advice or insight for me. Im a 32 yo otherwise healthy woman with a history of kidney stones, kidney infections and uti's. Ive had stones since the age of 18 and up until about 4 years ago i would only get them once or twice a year and they were always small enough to pass. At 28 i had my first stone that needed lithotripsy. Since then they've become much more frequent. This last 10 mos it has been at its absolute worst though. I began passing multiple stones a week and new ones were forming just as quickly which i never before knew was even possible. The majority of my stones have always been in my left kidney which i find odd. Ive probably had into the hundreds of stones in my left kidney (I've lost count) but only a total of 6-8 that i can recall in my right over the last 14 years. I almost always have a uti and have had probably 6 kidney infections which always appear related to an obstructing stone. 4 of those have been in the last 2 years and I've been hospitalized for 3 of them. The only procedures I've had over the years have been 2 cystoscopies, 2 renal ultrasounds,1 lithotripsy and countless ct.'s and X-rays. Ive just been approved for medicaid and would like to ask my urologist for more testing but the last time i saw him he kind of just brushed me off. He said my stones being almost exclusively in my left was just a coincidence bc he said there's nothing anatomically different about my left kidney. It seems like way too big of a coincidence to me though. He told me there was likely a genetic component and while i do have a family history NO ONE in my family produces stones at the rate i do. Once during a conversation with one of my urologists nurses she told me that while they do have a few patients who are stone formers like me that none of them are as young and otherwise healthy. That too seems odd to me. At this moment my condition seems to have improved and i only have a total of 4 stones, 3 in the ureter and one 10 mm in the kidney. What i want to know is if anyone has a similar story? Does this sound like it could possibly be MSK or am i grasping at straws? I just really want to find a cause for this. Im desperate and so incredibly tired of being in pain. For the last 7 mos I've been in pain management although it looks like soon i won't need it any longer, knock on wood. Im very much afraid that I'll get worse again but mostly i just want answers and something that i can do to keep this from happening again. I want my life back, i have 3 kids and its been difficult. My 9 yo can't even walk up and give me a hug bc it hurts to have his arms on my left side. Im in a constant state of discomfort at the least and excruciating pain at the most. If anyone has some insight or ideas i would be so grateful for the input.
3 Comments Post a Comment
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Avatar f tn
I also should add that i haven't been completely stone free in 2 years
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168348 tn?1379360675
I have gone five years with no stones and no UTI's.  It's so hard to say what causes activity

C~
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Avatar f tn
Hi! My story is VERY similar to yours. I'm also 32 year old female. Otherwise healthy. I really am feeling hopeless lately. First stones in 2006 with stents. Went 8 years with no problems, but the last year and a half have been awful. 5 lithotripsy and stent placements. Now awaiting my 6th ureteroscopy with stents currently in place. It's becoming more frequent and really disrupting my life. Endless stones. So many hospitalizations. I'm very worried about my prognosis. My latest CAT scan showed a lot of nephrocalcinosis. I'm wondering what your doctors are telling you? Your future? What are our chances of renal failure, etc?  
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