Medullary Sponge Kidney Disease (MSK) Community
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Avatar universal

Treatment Options for MSK

I've just joined the MSK Community but have been living with MSK for 16 years.  Even after living with MSK for so long I've never actually talked to anyone else with MSK.  After looking through past discussions I find it encourgagng to finally find others that are experiencing some of the same things as me.  I feel like I've tried every possible treatment out there but was just wondering if there might be something I'm missing that could be helpful.  I currently take Urocit K and HCTZ to help reduce the amount of stones I produce but find that it's really not making a difference.  I used to pass 1 to 2 stones a year but am now averaging 1 every couple of weeks.  At this point my family physician and Nephrologist are just giving me pain meds and have basically said that they really don't have any other options for me at this time.  I would really appreciate any advice or suggestions anyone might have for me.  
10 Responses
489228 tn?1291535054
Are you having pain from passing stones?  Or do you have pain even when no stones shows in your ureter etc.  Are they doing x-rays and actually seeing the stones or are you catching them?

This can make a big difference in treatment options!
168348 tn?1379360675

What type of stones are they? Calcium Oxalate?  If so, I may have some other ideas for you to run by your Dr to take.

MSK w/calcium oxalate stones
592774 tn?1325397342
I also went from one or two a year for years to many stones a month. Urocit K and water have not helped me . I have no answers. I lam going to ask about seeing an endocrinologist to see if they can control the stone production more. I will keep you posted on what they say.
Avatar universal
My stones are calcium oxalate and they're showing up in CT scans and I'm also catching them.  Even though I have stones in both kidneys I rarely have pain in the left. However my right kidney seems to hurt whether or not I have any stones.  The pain just seems to be constant and just never goes away, it just gets worse when I'm acutally passing a stone.  I guess that seems to be the biggest issue for me right now, just controlling the pain in my right kidney.  The stones are pretty small, usually around 2 to 3mm with the last one being around 4.5mm and take anywhere from a couple of hours up to a month to pass.  The pain also varies depending on the shape and size of the stone.  I just want to say thanks for helping me with this.  It's so nice to have others out there who know so much about MSK.
489228 tn?1291535054
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 managment... this also may happen before, during or after any of the above.

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.

So glad  you joined the site and hope this encourages you!!

Avatar universal
I am new here too. I am going to a new uro on Wednesday and I would love go have some of the pain articles to print off and take in to show him. My old uro decided I wasn't smart enough to handle hearing about mal and nephrocalcinosis(which h I also have) so I am switching.
Avatar universal
I am new here too. I am going to a new uro on Wednesday and I would love go have some of the pain articles to print off and take in to show him. My old uro decided I wasn't smart enough to handle hearing about msk and nephrocalcinosis(which h I also have) so I am switching.  I am nervous about what all of this means for me. I am a stay at home mom to four awesome kiddos but at this point the pain gets so bad I can't do fun stuff with them. Thanks for your help!
489228 tn?1291535054
I can relate my kids were all home and I was homeschooling when I started down with so much pain. Please send me an e-mail address so Ican send you some articles!!

Hang in there! You alone!
Avatar universal
Hi all, I found out i had MSK about 5 or 6 years ago. I have been passing stones since i was 16 years old im 39 now. When i found out it was MSK i was told this is something i was born with and there is not much info. about this condition. I have sufficent pain all the time in my back and sides. When it is that time of month the pain is truly bad, i was told they dont have anything to do with each other but i disagree. has anyone experianced this type of issue? i dont know much about the MSK issues but i would love more info. if anyone has any. im kind of suffering with it all because i do not have any medical insurance i cant afford it so any help would be great. Thank you, Kristi
Avatar universal
I have had MSK for about 25 years and have passed over 300 hundred stones. I am at a point that I hardly take pain meds because I don't feel them, some are 7or 8 mm am I getting mumb. Last July 2012 I had a blokage in my right uriter from my blater to my kidney. I could not eat or drink or I would get sick, but I felt no pain.  I had an appointment with my OBGYN female stuff they were takeing an ultrasound and all of  sudened the teck said" omg" "omg" and shows me. I have a blockage Tells me I need to go the Uroligest right now. Calls the office, come right in. I see a Aprn, Fnp.c and she said to me can you come back next week because the doctor is in surgery all day. No! I did get a hold of the doctor and took care of it that night . People do not take MSK with stone very seriously. Some times I am in the hospital 3 or 4 times a month to have stones removed.

They have me on Meds to try to keep them small so I can pass them Potassium Citrate 8 x a day, Chlorthalidone 1x a day, Allopurinol 1 x a day Multimineral Supplement 1 x a day, Calcium Citrate 3 x day, Vitamen D 1x a day for the most part they are some what small
any where from 6mm to 8mm and once in a while they get 1cm or bigger those are hard to pass so I need my pain meds.
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