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Avatar universal

MSK with Nephrocalcinosis

Not sure if you are still on this site or not but I too have MSK and I have it in both kidneys, although the right one gives me more pain. I just had a follow up with my urologist yesterday and there is no explanation for the pain.  I have been over and over this, to took me 10 years to get someone to even diagnois me with this condition and from what i have read on different forums almost everyone that has this and Nephrocalcinosis have "unexplained pain" and there is nothing that can be done except removal of the kidney and function has to be below 30% or a spinal blocker, I am going this week to have test ran for actual function, i have NEVER had this test done before but have been dealing with stones and kidney infections and other problems since I was 16 and I am now 32.  I don't want to loose my kidney at this point but the pain interferes with life. Most days I dont even feel like playing with my 2 year old and picking him up hurts. I have faith in my new Urologist but it is always nice to have other opinions.  At this point in my life I just want to wake up and not hurt, some days the pain is not as bad as others but a lot of days by the time its supper time I hurt bad enough that I want to take a pain pill. I don't take them for pain unless its bad enough that I am doubled over and vomiting and crying (pain level 10 I should say) and they really don't help so whats the use in taking something that doesn't help you.  I just wanted to see if someone out there could help  me find answers or at least things that would make living like this a littler easier. Thank you

This discussion is related to Medullary Sponge Kidney.
2 Responses
1711789 tn?1361308007
Hi there!

Unfortunately there is no specific cure for nephrocalcinosis. Management involves control of primary factors (if involved), symptomatic management and reducing further damage to the kidneys. Management is best discussed with a nephrologist after a detailed evaluation of the situation.
Hope this is helpful.

Take care!
Avatar universal
Thank you for responding.  I have been aware that there is no cure, in hope that some day Drs will not think that people with this disease are not drug seekers because it is TRUE HONEST PAIN. My Urologist is currently thinking about me seeing a pain management dr to do a spinal blocker for the right kidney in hopes of some relief.
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