I just found this site and thought a good place to ask since my drs don't really know. Anyway, I am a 39 yr old woman and was dx'ed with MSK probably 12 yrs ago or so. I have pretty much always had hundreds of stones in both kidneys, (not an exaggeration) I would always pass 1 or 2 stones a year with no problem. I believe my ureter is actually larger cause I can urinate a fairly large stone and I don't really feel it, I will feel it a day or so prior in my flank but usually not too bad a pain. Only once about 5 yrs ago did I have one too large and was in the hospital for lithotripsy and a stint. My question is. In like the past 6 -12 months I have really been passing a lot more stones more frequently. The way I understand MSK is that because of them being like sponges, where there are holes or pockets in the kidneys, urine will sit and form stones there instead of the urine just flowing through. And that even if we removed all the stones, more would just form because of them being like that. Please correct me if I am not right but this is what I was told. I drink LOTS of water but can't understand why all of the sudden I am passing more stones than ever before. X-rays from like 5 yrs ago and this week still show the hundreds of stones but the more recent one shows "more than before and larger stones". I was in the ER a week ago because of severe pain from them as I had a more than 2 inch stack of stones going through me that I had to have to be blasted twice this week. My citrate levels are low and I know that can cause stones to form but just don't get why they are now moving through me more and not staying put in the kidney where they have been for years. Any help or thoughts would be great. I also have Renal Tubular Acidosis, Lupus, Sjogrens, and a few other minor things.
Hi and WELCOME to our Medullary Sponge Kidney community (MSK) .. I wish i had an answer ... have you changed eating habits at all? Taking any type of antacid for indigestion that contains calcium or are you taking added calcium in vitamins, etc. Just some thoughts as I read your post.
Added calcium can cause stones in us to grow within days .. literally.
Thanks...haven't changed anything. My citrite is really low, like 72 when it's suppose to be well over 300. I know that causes more stones to form but don't know if that has anything to do with them moving down more. Will have to have my 3rd lithotripsy next friday (thats 3 within 17 day...does that cause any damage to anything?) After the one I had done last friday i have nerve tingling and a little numbness and pain in my leg on same side as lithotripsy. Dr. said it should go away.....Ugghhh
I know this is really late response but just came upon this site today and yours caught my eye. My story is similar to yours where I have 100's b/w both kidneys and pass maybe 3-4 a year. Lately it's been a bunch also with most recently passing a 8mm followed by 16 more! (w/o surgery!). I suppossedly still have a 7mm with 2 more in my right ureter. I have never passed that many before. Litho does not work for me anymore as they are embedded in my kidney. I saw a specialist in Dallas who feels it does more harm than good. If unable to pass a stone would recommend to retrieve via ureterscopy. But I am perplexed as well and wonder if you are still having issues??
Wow! I have the same! I started having stones at age 16 now i am 34. I have pasted close to 70 stones in my left side and only 18 in my right side. Lately they have gotten larger and more frequent. Yesterday i went threw my first lipotripsy becuase is was blocked and to large to pass. I also have dozens of stones stored in both kidneys. I not only have a urologist but i have a wonderful nephrologist. I have noticed that it depends on my stress levels. If my stress hormones are to higher i drops stones very fast ans they seem to be larger...
I have been diagnosed with MSK for a year now, and my specialist (in Aust) has put me on a low-purine diet to reduce the amount of uric acid produced -this is what causes the production of the stones in the kidneys. I know it is early days, but at 42, having changed my diet, I haven't had any stones recur for a year now! I have had stones since my mid 30's
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