Medullary Sponge Kidney Disease (MSK) Community
How to get MSK diagnosed?
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How to get MSK diagnosed?

I have interstitial cystitis, diabetes and several other health issues.  I am a "stone former" and recently had several stones removed during a horrible surgery, which included a kidney 'cleanout'.  I've never experienced such terrible pain in my 44 years, and I've had 19 previous surgeries including a previous stone removal with stenting during an IC flare up.  12 days out, I still feel like my kidney has been beat with a bat.  I was previously mis-diagnosed with renal pelvic lipomatosis (fatty infiltration of the kidney), and I wonder if I have MSK, and how to get it diagnosed.  During my surgery of 12/31/2010, my urologist found Randall's plaque, which lead me to the thought of MSK.  My pre-surgical ultrasound also uncovered my left kidney full of stones (still full, btw).  I'm a bit confused, still in pain and looking for answers.
Thanks in advance for your advice, friends!

Patty in Nashville
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1416790_tn?1282103199
Hello.  Sorry to hear of your troubles.  I actually was diagnosed with MSK a few years back because I had been in the ER quite often with pain related to kidney stones.  They figured something was unusual for how many times they were forming, and scheduled a special kind of X-ray.  I am sorry that I do not remember the name of the X ray, but I did lay on a table and there was a kinda large for its size, camera that literally "flew around the room".  It kind of went all over taking different views of my kidney, and that was what diagnosed me with MSK.  I do not know if there are other methods, but this is how they diagnosed mine.  It helped so much with the diagnosis, because when ANYTHING happens relating to flank pain, urinary symptoms, or the familiar feel of stones trying to pass, then I can say I have MSK, and they do what all they can think of to help.  I really wish I could remember what the X Ray procedure was called....but I do not.  I know that floating camera was above me, then would go to the right of me, high in the air, and take pictures, then fly to the left of me and take pictures, it was rather crazy, I had seen nothing like this before.  Maybe you could inquire about it, and someone would know?  Good luck on your search for answers!  I hope the best for you and will keep you in my thoughts.
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1416790_tn?1282103199
Hi, I just found this site, that explains a little about MSK, and how to diagnose it.  Hope this helps...

http://kidney.niddk.nih.gov/kudiseases/pubs/medullaryspongekidney/
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Thank you for the link. I will share it with my urologist at my follow up appt. I'm sure they have that type x-ray at Vanderbilt!  My endocrinologist thinks I have idiopathic hypercalcuria (I hope I spelled that right) because of some recurrant labs I've had, my kidney stones and the fact that I have early osteopenia. So that throws a wrench in things. I just want to know WHY and get it resolved, or at least better managed! It is 6:00 am and I've been up puking all night from pain and the effects of lortab (not strong enough on the pain but too hard on my stomach - I hate narcotics!)

Again, thanks for the link!

Patty
Best of luck to you!!!
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489228_tn?1291535054
Patty,
   Your history sounds like mine, I have IC, stones, MSK and I did have Osteopenia.  One thing we find is that most of us with MSK have a Vit D definciency and do not process calcium correctly.  It is put in our urine not in our bones.  Getting the Vit D levels to a normal range of 30-80, 50 being best, we see the calcium go into the bones!  I personally was so bad at 43 they wanted me on osteoperosis meds. now with Vit therapy, my density actually is normal!
I am now 46.  We did this with Vit D and 3month blood test to watch my levels only.

As far as MSK diagnosis, the gold standard is an IVP.
The terms your using are often associated with MSK. I finding that as we research some docs are refusing to label the MSK not sure why other then some just still want to  blow off our pain etc. issues.  Other docs have been amazing. The point is the treatments we list treat people with chronic pain issues caused by the calcifications in the kidney, what ever the cause the calcifications carry the same issues, concerns and treatments to help!

How is your IC?  I have an IC support website too if you would like the link

Good luck and please keep us posted on how things go!

Shelly
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168348_tn?1379360675
I had an IVP contrast X-ray .. .and you could see it plainly on the x-rays .. no doubt about it .. but I'm not so sure they do this test that often anymore ... my stones showed up on CT Scan.

C~
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Sorry for the lengthy time in replying.  The IC was flared horribly, and I was doing home instillations (mixing 5 meds, and putting them in via catheter). I even got to the point I had to cath to pee a few times.  THat has eased up, but I've got stones that are growing in each kidney, and I have daily kidney pain on the right side.  I've passed a couple on my own, and had one get stuck long enough to give me kidney infection.  Currenlty I'm fever free and stones don't hurt, but the right kidney always has a dull ache.  Any ideas?
THanks so much for everyone's kind input!
Patty
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168348_tn?1379360675
Hi Patty,

Unfortunately, so many of us have this dull ache, yet most docs just don't "get it" or believe it's there because they don't have a medical reason as to why. Some suggest it's nerve pain related.  Here's some great resources put together by our members about pain .. may be helpful for you.

http://www.medhelp.org/health_pages/list?cid=185

Please keep us posted!

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