Medullary Sponge Kidney Disease (MSK) Community
How is MSK diagnosed?
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This patient support community is for discussions relating to Medullary Sponge Kidney Disease (MSK).

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How is MSK diagnosed?

I hear that MSK is hard to diagnose... why is that? What tests are done to see if someone has MSK?

I am still suffering from kidney pain with no answers! 7 months, off and on blood in my urine, normal Ct scans... but a lot of pain!!

I recently got an IVP done and blood tests to see if I have any cancerous cells. I will not get any results until my next apt with the urologist on Dec 23rd. I am having cystoscopy done that day... and I am really not looking forward to it since they are not knocking me out, just giving me a numbing gel... ugh.


Anyway... lets hope for some answers!
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168348_tn?1379360675
An IVP w/contrast will show MSK.  That is the gold standard I think.  That is where mine came up with the diagnosis.  My Uro showed me on his PC screen .. you can see the tubules with the naked eye with MSK ... otherwise they should not be visible. They were flared.  

I had two cystoscopes for same reason as you .... blood in urine.  My cells even became atypical clusters .. turned out mine were atypical inflammatory cells from the stone movement changing them inside the kidney.  Once I passed the bulk of my stones, the micro and macro blood went away!

They cysto's weren't bad .. just stung a bit the next day.

C~
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592774_tn?1325397342
The contrast allows them to see the urine pooling in the enlarged collecting tubules in the Renal Pyramids. If you do not have calcifications in the collecting tubules, that is the only way they could see it. If you have calcifications in the collecting tubules they have an easier time diagnosing, even without contrast, because of the location of the stones in the renal pyramids.
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489228_tn?1291535054
Cheryl is right that IVP is the standard method and that info may be on the health pages also on some newbie articles on MSK too.  I am going to cut and paste my response to the thread, treatment options for MSK since i just spent the time typing out all the options to treat the chronic pain many of us suffer from;

There are several options to try for treating the constant pain, and yes there are several of use who have constant kidney pain even when there is no sign of a stone or infefction.

There are two articles listed on here... One is an e-medicine article about Medullary Spong kidney, the other one is listed as new procedure for MSK calcifications.  Both of theses are on the lowere right corner of this page.  (If that is not the right e-medicine article let me know.)  

There are several therories for the pain and honestly the pain may have mulitple causes. One is that there is pressure that builds up in the tubes.  The article below about a procedure by Dr. Wolf is mainly for this type of pain.  The other reason that many of us suffer from chronic pain is a biofilm infection actually sets up within the many calcifications.  Because a biofilm infection does not allow enough of the bacteria to slough off in the urine to showup on typical test for infection, these infections do not always show up on a urine disptick at the office or a culture. I can send you many articles about this if you would n like to pm me... also check under the health pages here.. they have done a great job of listing articles I am just not sure if they have my list of them for biofilms but we will work on that.
I have also written and article that is on my website for IC under MSK that explains this theory too.  My website if mainly for IC)Interstitial Cystitis Patients in Missouri and Arkansas.  However I put a link on the site just for MSK to post my research etc.
This article really needs to be update but I have just been working desperately to get the site information done etc,  our support group is called MOARK IC and can also be googled.


The treatment options for the chronic pain appear to be as follows.

1. Increase your fluids and do not allow you kidney to get empty, since this increase pain,

2. decrease your meat intake to about 6oz a day.  the pain level does seem to increase if our kidneys have to process a lot of protein from meat.

3.  Ask you physician about trying a long term antibiotics... if you are on antibiotics for a long period of time does the pain go away?

    Along that lines many of us have found so relief of help through a natural antibiotics by American Biotech labs, called Silverbiotics. You can google the title and their website will come up.

4.  Going for massage for the muscles around the kidney etc. seems to help too, though many of us can not tolerate eve having our kidneys touched. The muscles seem to try to protect the kidney and actually knot up around it.  Going to a good massage therapist they can keep these muscles relaxed, I go to on through my local hospitial and they are really really reasonable.

5.  Last of all is the procedure by Dr. Wolf below.  Though this is not a cure, it is a treatment.  Some patients get relief dramatic relief by the procedure itself.

For those of us with chronic biofilm infections, the procdure seems to kinda knock the top layer of calcifications off, allowing the antibiotics to penetrate deeper into the kidney and therefore gives us a remission.  My understanding from Dr. Wolf is that on average this procedure last about 2 years but can be repeated.

6. My doctor talked to a physician, who wrote an article in MS Consult intitled the Complicated Urinary Track infection, great article but this physician has had some antidotal success with patients with MSK who have chronic infection.  I can not list the info here since at this point there is no research on whether or not this will work.  We are trying it, I am better but that may be more from having the procedure and my upping my dose of Silverbiotics.

7.  Some do require pain managemene before, during and even after having the surgery.

also one thing I did forget to state on the other page is that most URO's can do the procedure listed on this page... and if you need to pm also for any info your doctor may need on that, including the full text article etc.

I hope this gives you so hope and direction.  More then anything it will give you confirmation that your pain is real and you are not alone.  Taking this into your doctor can help you to get better treatment since truthfullly most of them just do not know and it goes against what they are being taught in medical school.  I am glad that joined this site and if you need any more info, you can pm me.  I do have several pdf of articles that we can not legally post the whole article here etc.  Also the CL of this board has a really neat website she has put together on MSK..., (Nancy) it is also worth checking out and I think it is listed in a thread and if not in the health pages.

I hope this encourages you!!

Shelly
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691983_tn?1266808432
did they tell you yet if you have msk?they told me i had it with just a ultra sound and other family members of mine they had it too with just a ultra sound.since then i have had many many ct's and a few ivp too.do they see stones?good  luck with your test.
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707438_tn?1240963240
THEY FOUND MY MSK THROUGH AN ULTRA SOUND OR SHOULD I SAY THE FINAL TEST WAS THE ULTRA SOUND I HAVE HAD MANY CTS AND IVPS ALWAYS THE SAME OUT COME NO REASON TO BE HAVING SUCH SEVERE PAIN UNTIL YESTERDAY WHEN FINALLY AFTER 3 YEARS SOMEONE GAVE ME THE ANSWER I HOPE YOUR DOCTORS TREAT YOU BETTER THAN MINE DID SOMETIMES I THINK I AM GOING NUTS BECAUSE NO ONE BELIEVES ME
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192055_tn?1263559137
Wow, this is so much great information!! I have to run out but I will reply shortly! I have not gotten my results from my IVP yet. I will get my results on the 23rd when I see my urologist again- I also have a cystoscopy planned for that day. I am really nervous about it since he said he was going to use a 'numbing gel' and not putting me to sleep. I hear that for this procedure, they usually put you to sleep.... anyone else ever had this done with numbing gel only?
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691983_tn?1266808432
you need to know i already had 100's of stones ,when i had my first ultra sound so you could clearly see i had msk.because of where all the stones were located.i didn't have any troble the first 30 years of life with it so they had no reason to even look.till i started spiting stones out left and right.
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