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Medullary Sponge Kidney Disease (MSK) Community
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Avatar universal

New to the forum - veteran to kidney stones

HI.  I'm new to this forum and just wanted to touch bases with anyone else out there.  I'm excited to find this and see that I'm not alone in this fight.  I'm 39 years old and have been battling these stones for over 7 years now.  At first my doctors just told me i'm a chronic stone former, but just recently they have finally used the MSK term.  Sounds sily, but having a name for it makes me feel a little better than just this unknown reason for forming so many stones.  I've had 28 sugeries so far including so many lithotripies, and 2 Percutaneous nephrolithotomies, not to mention numerous stents.  i hate stents!  my last surgery was just this past Monday.  I take allopurinol, urocit k, lisinopril with htcz daily to "prevent" the stones, but obviously they don't work.  I'm supposed to be on a low oxylate diet, but trying to do research on what to eat and what not to eat is insane!  every web page says something different.  I stay away from anything green.  but there is a quality of life issue and i cheat to have some chocolate every once in awhile.  I only drink water and lemonade.  I have recnetly figured out that eating grapes and apples "may" have made me pass more stones.  usually i form stones very quickly and very big.  I work full time and am fortunate that my company allows me the time i need for the surgeries and recovery afterwards.  but i worry all the time how much longer they will be flexible with me before just deciding to let me go.  I can't imagine going through this without health insurance.  my medical bills already are overwhelming and the constant calls from collection agencies are almost as depressing as the daily pain.  My husband loves me, but this is stressful on him as well.  He has to sit and watch me go through the pain and the constant vomiting.  I'm fortunate that my urologist is understanding and doesn't hesitate to prescribe me the necessary pain meds whenever i ask - but i hate taking them.  and i haven't found one that really does the job.  either they make me vomit constantly or they don't last very long.  This is a very frustrating disease.  some days all i want to do is give up and have my own pity party.  other days i feel strong enough to accept this hand dealt to me and push through it.  Either way, I'm glad to find this forum and know that i'm not alone in this. I hope to learn from you all and maybe pass along anything that i've learned through my experiences.
2 Responses
489228 tn?1291535054
Then we left you with no responses and for this I am  very very sorry! Welcome and no you are not alone!!!  I am sorry for all you have been through and hope through this site maybe we can help you to find a better quality of life!!  One thing to consider it that in your case the large quick forming stones are a symptoms of an active infective stones.
I believe and research supports that for many a biofilm infection actually set up with in the calcifications.  Stones cause infection and infection cause stones.  It is a vicous cycle.  The key is getting the bacteria basically controlled. We can never kill it but by controlling it you can prevent new stone formation.  As far as diet,for most of us stones are cause mainly by the defect in the collecting system and some metabolic issues.  Other then avoiding taking high doses or mulitvitamins etc. diet does not do much for us. NOw I have read that taking magnesium and b6 can really help too.,  Magnesium like Vit D helps the calcium go into the bones and not the urine and B6 competes and attaches to the oxalate taking it out of the body instead of forming stones.

The other big thing we have found is getting your Vit D levels checked. Low vit d is common with us because the body uses Vit D to fight infection and disease.  In the right levels this can keep calcium in the bones and not the urine too.  It is crucial to have this checked by your doctor though since to high levels can increase stones.

Again, welcome and I am so gald your here!

Shelly
Avatar universal
I had my first kidney stone in 1989 when I was 14 & it was the size of a quarter. I was the youngest patient my doctor had done a lithotripsy on (back then they put you in a huge tub of water & you were awake for the procedure). I didn't have any more stones until 2005 when I was pregnant with my 3rd child -another lithotripsy once I delivered. My next one came in 2009 and was very large, and the end result was not pretty- 2 lithotripsies and a laser surgery done in 3 weeks time. This was when I got the diagnosis of MSK. It also resulted in a week long stay in the hospital for massive internal bleeding on my right kidney and yet another laser surgery. My right kidney is now deformed (shaped like a horseshoe). Fast forward to June of this year and I have undergone 2 more lithotripsies (possibly will need a 3rd one - will find out next week), and currently have bilateral stints which are painful enough on their own. It's almost impossible to get my urologist to prescribe anything for pain, and I am allergic to most pain meds so needless to say, I am completely miserable. I have been working, but the constant up & downs of having even a desk job are wearing me out (not to mention being in the bathroom every 15-20 minutes). I constantly have to go for xrays, labs, etc, and I am seriously considering trying to get disability. By the end of the day I cannot walk. I am wondering if anyone else out there has attempted this or actually been successful at it? Obviously, if you are frequently in the hospital and having to leave all the time for tests you can't really be counted as a reliable employee. I welcome any thoughts or comments..maybe you have thought of something I haven't.
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