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Medullary Sponge Kidney Disease (MSK) Community
517 Members
I am a 38 year old mother of 3 boys and was diagnosed with MSK a few years ago. I have suffered from kidney stones since age 20. I have had 3 lithotripsies. I see a nephrologist, urologist, and a general physician. My kidneys do not metabolize correctly. I have to take a lot of Pottasium citrate and loop diuretics to keep my kidneys from building large stones. I have CT scans yearly to check to see if I have any large stones blocking my kidneys because I complain of pain.
I have had chronic pain for several years. It used to be on and off but the last few years it seems to be a lot more and for longer time periods. I thought I was starting to go crazy because I don't pass stones with my pain. Maybe a bit of sand sometimes or a tiny one. It feels like my kidney is swollen and sometimes stabbing pain that takes me down for days at a time.
I don't think my doctors believe me that I am in the pain that I am in. My family and friends know how many weeks every year I lose to this. The only doctor that gives me pain meds for this is my general doc. Its like one prescription of 20 pills every 6 months. Mostly I think because I am afraid to ask her because I feel like I will be viewed as a drug attic. I consume a lot of motrin/advil which I am not sure is good to take. I save the vicodin for when I am dying and feel like going to the ER.
This week I was down with severe pain my husband took off work to help take care of the house and kids. I couldn't get a hold of my doctor to get a refill for 4 days. Once I did get the refill I had some relief and was able to function again. The pain was there but dulled down.  I also live on a heating pad when this happens. It seems to help a lot.
Is this pain something I am going to have to deal with for the rest of my life? And why do doctors not think that this is a problem. I have read so many comments and forums in the last couple days its amazing how many people are just like me out there. Also that have this pain.
Oh and also its usually always my right kidney that hurts.

1 Responses
168348 tn?1379357075
COMMUNITY LEADER
Hi there -- here's some links to some things put together by our members  If I recall correctly, there's info on diet ..  WELCOME!

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

Great Link Why Does It Hurt yet No Stone:http://www.medhelp.org/posts/Medullary-Sponge-Kidney-Disease-MSK-/medullary-sponge-kidneys/show/565929
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