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Medullary Sponge Kidney Disease (MSK) Community
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630321 tn?1222288127

lots of questions now

I've heard about MSK today for the first time.  My daughter gave birth last week to our first grandchild - hooray!  But she had high blood pressure throughout her pregnancy and her doctors were trying to get to the bottom of that.  Urinalysis led to an MRI and today she was told that she has MSK.  She was told that her kidney function is 50% of normal due to the accumulation of calcium which has never passed as a stone.  (She's never had stones - this is the first we've learned of any kidney problem.)  She has been prescribed medication - don't know what - and I have the impression that she will be taking the medication forever.  

This freaks me out! My Internet reading suggests to me that MSK is regarded as benign with an excellent prognosis but nothing in those articles discusses a connection to high blood pressure (?), risks associated with significant accumulations of calcium, or long term pharmacological treatment.  I guess my questions concern whether I should understand her prognosis as excellent and whether the medicine is likely to prevent future problems.

Of course one way to find out would be to ask her nephrologist, but she lives at a distance so it may be a while before I'm able to do that.  I'd love to hear knowledgeable suggestions in the meantime.
8 Responses
489228 tn?1291535054
First of all as we read about MSK so much of what is written has just not been the experience of those of us who have it.  The reason being that that state it is a benign disease in all but about 10% of the people BUT THOSE 10% SUFFER FROM CALCIFICATIONS WITHITH THE MEDULLA, NEPHROCALCINOSIS, CHRONIC INFECTION, CHRONIC STONES ETC. These patients usually have metabolic issues that help contribute to the build up of calcium etc in their bodies.  For me all my stones showed up after each pregnancy because that is when I take calcium or even natural calcium supplements for my babies. (Many of believe however the more we talk to patients with this disease that the doctors really have no idea and tend to ignore the problems associated with MSK because of reading papers like you suggest... unfortunately.)

The good news is that Dr. Wolf at the University of Michigan has developed a procedure for removing the calcifications in the medulla.

URETEROSCOPIC LASER PAPILLOTOMY TO TREAT
PAPILLARY CALCIFICATIONS ASSOCIATED WITH CHRONIC
FLANK PAIN
DAVID A. TAUB, RONALD S. SUH, GARY J. FAERBER, AND J. STUART WOLF,
UROLOGY 67:
683–687, 2006. © 2006 Elsevier Inc.

I recently had this procedure done in Aug.  Until I found out about this procedure I had been told that the stone were too deeply inside heart or meat of the kidney.  Dr. Wolf is really good and specializes in this procedure.  We did ahave another patients so far who doctor got the report etc and was able to do it himself.  My URO just felt that he would prefer that someone who had already done it many times be the one to do the procedure not be his first.  If you would like more information or I can help you more specifically you can send me a private message with your e-mail address or phone number and I would be glad to talk to you directly!  There are other areas of help too but honestly it has through long hours of reserach and I am still trying to find physicians that specializes in other areas of this, such as the chronic infection etc.

I have the contact nfo, for Dr. Wolf's office etc too. Don't be too disappointed if the nephrologist does not know that much about it either. For the most part as patients we have been taking the research in and educating our physicians......

Shelly
630321 tn?1222288127
Shelley, thanks for the information.  Right now, my daughter is being treated with medication.  I don't know what it is, but I will find out I'm sure.  She is distressed because she's been told that the medication would be harmful to a baby, either in the womb or nursing the baby she has.  It seems odd that high blood pressure doesn't seem to be associated with/attributable to MSK, so perhaps we stumbled into this diagnosis serendipitously.
168348 tn?1379360675
COMMUNITY LEADER
Hi, WELCOME to the COMMUNITY.  As Shelly mentioned 10% have complications as you describe.  I have MSK but form and pass small stones w/o the complications.  However I am closely monitored by a top notch Urologist because he said sometimes there are complications to be aware of.  I'm not sure on the high BP per se, but I am so glad you have answers to the kidney issues at hand.  Might the elevated BP be from the "renal" artery ?  That is something that would affect overall BP if it is not working properly .. my mom went through a battery of testing by her Neph in this regard.  She is 82 and we don't know if she has MSK or not, but she has history of a kidney stone that almost killed her in ICU for 11 days with blood poisoning.  Her med is Alpurinol which she takes daily cause hers are uric acid stones; mine are calcium oxalate.

I have known Shelly for over 3 yrs ... her posts and personal experience are the best on the Internet .... she has been though so much and has so much to offer all of us with MSK.

I am so glad you found us ........................please reamain with us and keep us updated and keep asking the ?'s ... this is so key to knowledge.

CONGRATS on the baby!!!  

Cheryl
MSK w/calcium oxalate stones and recurring UTI's
168348 tn?1379360675
COMMUNITY LEADER
I misspelled the drug name:  Allopurinol

Here is the link from above in our drug database:
http://www.medhelp.org/drugs/allopurinol/show/3713

Another site:
http://www.nlm.nih.gov/medlineplus/druginfo/medmaster/a682673.html

I also read online to advice Dr if taking and pregnant or becoming pregnant .. I don't know if she is on this med but this one came to mind when I read your post.

Cheryl
630321 tn?1222288127
Thanks Cheryl as well as Shelly.  I'm getting a little bit more information from my daughter, which changes the picture a little.  She has been told she has renal hypertension as well as MSK; it isn't clear to me how they are related.  The medicine is mainly related to the hypertension.  She's taking:

Hydrochlorothiazid - a diruetic
Nifedipine - BP medicine of some kind
Levothyroxine - a thyroid hormone
Netoprolol - a beta blocker

I tried to spell the names correctly!
168348 tn?1379360675
COMMUNITY LEADER
I take the name brand thyroid drug Synthroid.  I'm the community leader over on thyroid so pls. stop by there anytime with thyroid questions.  The renal artery has something to do with overall body blood pressure.  My mom's was injured many yrs ago with an almost fatal kidney stone .. and 15yr later now she has BP problems.

Pregnancy hormones tend to bring on issues while pregnant .. I had a staph infection while pregnant and they kept saying I was stressing out ... it finally showed up and all was ok, but it put me into pre term labor more than once .. that is stress I ask ?

Any thyroid ?'s .. let 'em rip here or on thyroid .. we are here to help .. wish I knew more about MSK to help you with some of yoru ?'s .. but others may jump in .

C~
630321 tn?1222288127
Cheryl, all I know right now is that her thyroid hormones are low too.  No information yet on the relationship, if any, to the kidney issues.  It's a bummer to have all of this come up when we should be celebrating the new baby, but I guess that's how it goes sometimes.  As you say, pregnancy can apparently trigger other issues.

By the way, I misspoke earlier when I said that our daughter has never had stones.  Apparently, she had one or two up a couple of years ago.  I'd forgotten that.

I'd like to think that this is all going to get better.
489228 tn?1291535054
I believe off the top of my head that Renal Tubular Acidosis is often connected with MSK and I believe that that can is often associated with thyroid problems so this maybe another question to look into.  I will alos try to find the article on it.

As far as her meds go.  all hospitials usually have a nursing training person etc. or basically a nurse tha specializes in helping new moms with nursing problems.  The La Leche league also may be able to help.  I would ask them about the risk of the medications she is taking along with if there any safer alternatives, which sometimes there are and the doctor may not be aware of!

I see what I can find!

Shelly
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