Medullary Sponge Kidney Disease (MSK) Community
Why are so many Drs. unaware?
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This patient support community is for discussions relating to Medullary Sponge Kidney Disease (MSK).

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Why are so many Drs. unaware?

Hi, I was diagnosed with MSK in both kidneys 5 yrs ago after passing kidney stones. I was told i had 1 stone in my left kidney and 2 in my right. but after passing those I continued to pass stones, after more tests I was told both my kidneys were full of stones. I have constant pain in my right kidney, which Drs. tell me could not be from the MSK. The Drs. do test to see if there is a blockage causing the pain and when no blockage is found they look at me like it is not important and send me on my way. I recently took my 24 yr old son to the hospital for his fist kidney stone (when he called and told me how he was feeling I knew right away he was passing a stone) I told the emergancy room Dr. that I had MSK and looked at me like I had 3 heads and said he had never heard of it. From reading more about MSK since I was diagnosed I know the is not such a rare thing. But I don't understand with so many of us suffering with this end up going on an endless search for a Dr. that not only understands MSK, but most Drs. has never even heard of this. It took me 3 yrs of suffering to find a Dr. to help me, all others either had never heard of it or pushed it off as a birth defect and flat out told me they could do nothing to help.
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168348_tn?1379360675
Hi

Welcome to our community .. unfortunately so many of us here on this community feel the same way :(

Maybe they only learn about it for 20 mins in med school .. I'm not sure, but it really doesn't help us at all when we are in pain and have to teach the doctors.

(sigh)

C~
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Avatar_f_tn
Hi
I am new to the forum but I can relate to you about the doc not knowing about MSK I was diagnosed about 13 years ago and have been accused of being a drug seeker and being a faker. I even had a dr. tell me all I had to do was go out an get a job and stop depending on my husband for everything and I would get better. I have finally found a Dr. that know about MSK and doesn't treat me like I am crazy. I don't know why they don't know about this disease but one of my thoughts is Dr. don't look further than just the kidney stones or the UTIs ones those resolve that don't look any further for other problems. It took me having 8 kidney stones in a month and a very bad infection for them to look further to the cause of all my stones and utis.  I sure hope that Dr. start to become more aware of this disease so others do not have to suffer for years like I have.
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Avatar_f_tn
I feel your pain! I was one of the lucky ones. When I was diagnosed 5 yrs ago I only had to go to 3 urologists before I found a doctor that knew and understood the pain associated with MSK. He did everything he could to help me surgically (scraped both my kidneys clean to wipe out the pockets collecting stones) but sadly I was still in pain. But hey, he at least tried and for that I'm glad (even if that was the most painful thing I've ever experienced). He did at least send me to pain management after than and I was again lucky to find a pain doc that listened and understood and gave me the meds I needed. Then I moved to another state (to be close to family) and I found another doctor that helped. Unfortunately that doctor closed his practice with no notice and since I now live in an incredibly conservative state, pain docs are uber strict and no one wants to take me on, despite the records I have from 5 yrs of pain management. So yeah, I feel your pain. I was lucky before, and my luck has officially run out. Even the doctor on the Pain Mgmt forum on this site said she didn't think MSK caused pain unless you're passing a stone. I wonder how many people have to suffer before the condition is accepted by the medical community at large? I wish you all the best of luck. It IS possible to find a doctor that understands - it can just be really, really hard sometimes.
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168348_tn?1379360675
How are you doing ?

C~
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