Medullary Sponge Kidney Disease (MSK) Community
MSK pain. i'm not alone!
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This patient support community is for discussions relating to Medullary Sponge Kidney Disease (MSK).

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MSK pain. i'm not alone!

I'm so glad I found this forum. I was diagnosed with MSK when I was 18 after I had my first kidney stone attack. Since then I would be able to pass stones without extreme pain. I'm now 27 and for the past 10 months I have been dealing wth constant pain in the kidney areas and bad pain in my bladder. I don't have insurance so I've been stuck in bed the majority of that time with the pain and the constant nausea. When the pain would get uncontrollable I often ended up in the ER up to twice a week. I would get doctors who look at me as if I was lying about what I was going through which often made me wonder if it was all in my head thinking the doctors are right they know this stuff. I then chose to look up what I was diagnosed with and educate myself with what exactly it was I was dealing with. I came across these forums ans realized I'm not the only one, I'm not crazy and the doctors could certainly be wrong. Being stuck in bed feeling like crap constantly has been very depressing. I'm happy that I'm not the only one but on the other hand I think its going to be a long while before more doctors become aware of what exactly it is we are going through and are willing to help as apose to looking at it as if we are just trying to get pain medication. If there is something else that would help me I'm up for it. But for now I choose to not go to another doctor explain my situation and get told I shouldn't be having consistant pain therefore there's nothing they can do. Anyway! Again, I'm glad I'm not the only one and I wish you all luck and hopefully our situation will get better.
168348_tn?1379360675
Hi and welcome ...

You are so right .. you are NOT alone and we are equally glad you found us, too!

How are you feeling now?  I just read your post and wanted to respond.

Here's some info our members put together:
http://www.medhelp.org/health_pages/list?cid=185

C~
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