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Old 09-13-2007, 03:01 AM   #1
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nicky111 HB User
Medullary sponged kidneys

I have been diognosed with Medullary sponged kidneys. I have had all the xrays and scans available. I am in constant pain and no medical person can help me. I pass many stones and pain killers dont help. Everyone just expects me to carry on as normal because most of the time i look fine. I really need to talk to someone with the same problem.

 
Old 09-13-2007, 09:44 AM   #2
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Re: Medullary sponged kidneys

i dont have this.How i did have stones.And pray i dont ever get anymore.
im not sure what your medullary is?
could you tell me more about it?

 
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Old 09-13-2007, 02:14 PM   #3
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Re: Medullary sponged kidneys

I have medullary sponge kidney. I have problems with chronic urinary tract infections because the urine tends to pool in the wierdlly shaped tubules. I just completed lithotrypsy for kidney stones but those were probably related to increased blood calcium level secondary to a parathyroid adenoma. Other than the UTIs, the medullary sponge kidney has not been a problem. The medullary sponge kidney itself should not be causing pain. I suspect that your pain is related to the kidney stones which may be related to the sponge kidney. Discuss this with your urologist.

 
Old 10-05-2007, 09:02 AM   #4
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Cool Re: Medullary sponged kidneys

I also have Medullary Sponge kidney. I developed cysts which abcessed terribly and caused the kidney to shrink and cease to function. It made me very sick and so I had that one removed. That was 20 yrs ago and now I have been diagnosed with the disease in my other kidney with one cyst present. I do not have stones and I know this disease usually causes this. I really don't know much about it and am seeing my doctor in 2 weeks following these new tests. The CT scan also revealed "air in the bladder" which I have never heard of. I am not sure if the nephrectomy caused this or if it is unrelated. Does anyone else have this problem? I suppose the care of sponge kidney would involve eating less red meat and more fish and chicken which is what I was told 20 ysr ago.
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Old 02-13-2008, 10:59 AM   #5
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Re: Medullary sponged kidneys

I have also been diagnosed with msk 18 yrs ago after giving birth to my third child.At the time I had a kidney infection and passed a few stones.I was then sent to a heart specialist to see if I had crystals in my heart and also have my eyes checked for this same problem.I did not know at the time what the fuss was all about,I had three beautiful chidren and a wounderfiul husband and was feeling fine so I never went back for treatment.This was 18 yrs ago and since then I have managed to cope with recurrent uTI and kidney stones.Lately I find myself feeling tired all the time and I have constent pain in my sides.I wake up at least 2 or 3 times a night to go pee,and I pee at least every half hour thrue the day.Im happy to have found this web site to get answers to my qwestions get advice and hopefully give advice.Thank you.carol

 
Old 05-19-2008, 09:23 AM   #6
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Re: Medullary sponged kidneys

Nicki

I was diagnosised with a spongue kidneys in 1994. Since this time I have been to several urologist that either have no experience with this problem, or think they know and consequently don't! The only specialist that made any sense was the chief of urology at the Lahey Clinic in Mass. This doctor informed me that a sponge kidney was an inherited gift that NO matter what one eats or drinks, they will get stones. The best way to avoid this problem would be to drink a lot of water along with a water retention medicine. Well, this has worked until now....recently I have past 6 stones upto 5cm. Now, a new urologist is informing me to stay on a LOW sodium diet, and drink not so much water.............I'm currently seeking another specialist from Boston. No two doctors can agree.........I expect that someone has done major research on this condition........if anyone know of such a person, please forward!
Doug

 
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