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Medullary Sponge Kidney Disease (MSK) Community
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What can I do

I have been diagnosed with MSK.I have been told from my Doctors that I will have stones for the rest of my life.Is there anything out there that I can do to get rid of these stones.I have read all these things about different things you can try to dissolve the stones.My Dad also has MSK and now in his older age his doctor tells him his kidneys are in bad shape.I have attacks with stone just about every month.I have passed about 45 so far.They tell me that my right kiddney is full of stones.It seems like every time I over do it or when I do alot of lifting the I start hurting.I could not even get out of the bed yesterday for the pain I am so tired of hurtting.Please if you have  any advise.
2 Responses
168348 tn?1379360675
COMMUNITY LEADER
Hello and WELCOME to the MSK Community!  The members of this community have MSK like you and your Dad .. I, too, have produced kidney stones.  Mine are calcium oxalate.  Have you had yours sent to the lab for analysis?

When you over do, I know that pain .. I have been there.  Even going swimming or on an amusement ride can be enough to set off the pain and/or pass a stone.

There are certain types of supplements that your Dr. may recommend based on the types of stones you create.

A 24hr urine study is advisable to help figure out what supplements to take.

I am supposed to take Magnesium + Vit B6 along with lots of lemonade or citric acid but I get bad reflux from it .. soooooooooo just isn't working, but I keep in touch with my Dr. and we review it all ev 6mos to a year.

I was told 99% of those with MSK do not have severe kidney damage; however, I have seen others online who have suffered dearly and that is why it is very important to have an excellent doctor who knows MSK and how to treat it and what to look for.

Cheryl
489228 tn?1291535054
I am afraid at this point, I have found nothing that will clear out all the stones.  I also have both kidneys FULL of stones, too many to count, and 4 larger ones. I also have a chronic infection from all the stones. For years I tried everything from taking daily vinegar to taking a product called Kidney sp.  It did nothing for my stones but did a job on helping my bladder to become in flamed!  I now also have Interstitial Cystitis, too!
However, my stones have not dramatically increased in 10 years either!

Recently I have found info on a surgery that can clear out all the stones and so far none had reoccuring stones after 3.8 years!  I am checking into this myself and will keep you posted!  I am to the point that the right kidney is in constant pain, from infection, stones and inflammation.  It is truly effecting my life!  My doctor has even considered removing it, however my left one has larger stones and a cyst.  The MSKer's that I know who have had their kidney removed, the remaining one quickly deterorates because it is doing all the filtering!

If your stones are not painful, I would encourage you to do what you can to prevent more stones.  LOTS of water, B6 magnesium, and asking your doctor abouit using UROCIT-K.  This is a medication that can help not to make new stones.  He/she should know if it is right for you!  There is  product called Lithonal think that is right that swears it will remove stones.  I contacted them but with my IC and having MSK they could not tell me if their product would really help me.  I think it is mostly made up of diurectic herbs like parsley, golden rod, corn silk etc.  many of these can help to prevent new stones but like I said they did not clear out my old ones after taking them many years!

I am sorry that I could not give you the answers you seek.... however the new research I have stumbled on has given me a lot of hope for the first time in many years!  I will keep you posted!

Shelly
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