Medullary Sponge Kidney Disease (MSK) Community
msk no cysts?
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msk no cysts?

can you have medullary sponge kidney if ct scan doesnt show cysts? i have extensive bilateral nephrocalcinosis, never had a kidney stone.  i sometimes have hypokalemia and almost always have leukocytes in urine.  first nephrologist told me ct scan showed it was not msk and we had to get to the bottom of it to prevent further kidney damaged.  she couldnt figure out what it was before i moved 500 miles away.  new nephro feels it is msk because he has ruled out renal tubular acidosis, hypercalcemia, hypercalciuria, et al that can cause neprhocalcinosis. he says not to worry b/c it is a "benign" condition.  i sometimes have episodes of significant kidney pain, my serum potassium gets low, i get dizzy, my blood pressure shoots up and i feel terribly sick for a couple of weeks and then the pain goes away and potassium goes back to normal.  any thoughts?
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168348_tn?1379360675
Hello and WELCOME to our Community.   I don't think you have to have cysts on your kidney although I've had them come and go with some CT scans thru the years.

C~
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489228_tn?1291535054
Hmmm MSK is characterized by tiny cysts in the collecting ducts.  I don't think
we could make a judgment on a diagnosis, especially if the doctors don't know.

That said we do know mSK is considered a brith defect fromn an unknown cause.
Therefore it is possible to have a variation in the defect.

The potassium level swings are likely causing your dizzy, high blood pressure etc.
swings.  Potassium low or high can be very dangerous and should not be played around
with.  Make sure your doctor is monitoring it.  Likewise makes sure you keep safetly
(but not ETREMELY ), hydrated.  NOt having enough fluids in your body messes with Potassium levels and on the other end flushing it out too much or too fast can deplete
your body  of needed potassium level.

I hope that helps... sorry i could not give you more of an answer!

Shelly
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168348_tn?1379360675
Oh .... I was thinking cyst on the kidneys ... I am clueless if I have those tiny cysts in the collecting ducts but my diagnosis was very apparent on the IVP with Contrast with the naked eye .. My uro showed it to me on the computer screen right from the XRays.

C~
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Avatar_f_tn
I think you and I have almost the same thing I too have bilateral nephrocalcinosis on both kidneys have they checked your pth.  I really don't have any pth due to thyroidectomy that was done to me 2 1/2 yrs ago.  I have to take calcium and calcitriol to substitute the pth.  I too get kidney pain and they put me on a low protein high fruit high vegetable diet.  Hope you feel better.  
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168348_tn?1379360675
We have to be very careful what type of calcium we take.  Due to the stones .. if you get any stones you may want to ask .. I think the Calcitrol is the only one I am allowed to take and only if I need it.  A fine line to walk for sure.  I get calcium oxalate stones.

Urocit-K is the med some take to counteract the calcium oxalate stones but I get terrible GI pain from it so it's no good for me.

C~
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Avatar_f_tn
thanks for all the responses.  i guess my understanding of medullary sponge kidney was that the disease got its name from the appearance of the kidneys (they look like sponges b/c of all the cysts).  so i was confused as to how a different dr could come to a different conclusion based on the same radiology report my first dr used.
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1002319_tn?1265178710
Hi. An IVP will show a tubular defect if indeed you do have MSK. It is a condition you are born with. Have you had any Lithos??? Cara
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1002319_tn?1265178710
Hi. Let me rephrase that. MSK is a birth defedt of the tubules ... the tiny tubes inside the kidney. Tiny sacs form in the medulla creating a sponge like apperance. These cysts keep urine from flowing freely through the tubeules. You need an IVP. The dye they inject goes to the kidneys and it makes urine visable to show any blockages or defects. The Cysts of MSK will show up as clusters of light in a IVP. Treatment for MSK includes focuse on curing (meds) UTI's, removing kidney stones and preventing recurrent infections or stones.
The goal is to do 24 hour urines and analyize stones so that hpoefully there may be a med. (diuretic) available to help prevent future stones from forming.
As stated if you are in fact hypercalcuria there are meds you need to find the real problem to try to treat it. Cara
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1002319_tn?1265178710
Hey chitchat are u eating the proper foods? Cara
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Avatar_f_tn
i had an ivp i believe...it was a ct scan with and without contrast...it showed "bilateral medullary neprhocalcinosis, no other findings consistant with medullary sponge kidney" meaning no sponge like appearance or cysts but my new nephro feels it still could be msk even though the previous ruled it out on same lab report...hence my confusion.
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