Medullary Sponge Kidney Disease (MSK) Community
anyone else?
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This patient support community is for discussions relating to Medullary Sponge Kidney Disease (MSK).

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anyone else?

So after reading the previous posts i'm getting slightly mixed emotions, i am so glad to know i'm not the only one going through this (although knowing what the pains are like, glad doesn't seem to be the correct term!) but i'm also just SO fed up!
I first started to get excruciating pains on my right side (from underneath the ribs all the way down to my bladder), almost 2 years ago now. At first the pains came and went, and i didn't think much of it; however around February this year, the pains came and stayed. They are here everyday, it's like a constant weight on my right side. For most of the day i just feel a mild discomfort and no more, but then sometimes the pain starts all of sudden, it's almost unbearable, at its worst, i can't walk or even stand up. I never know when the pains are coming, no warning or any signs, there doesn't seem to be anything that sets the pain off, however it does seem to be twice as bad after i eat, but it still hurts when i don't eat.
The pain drove me to ER back in feb. where after countless blood and urine samples,  two x rays, an ultrasound scan and a CT scan, the doctor diagnosed me with MSK. He seemed to know nothing about the condition apart from its name. Ever since i have not been able to find anyone who can tell me what the hell is wrong with me!
Saw the urologist about 3 weeks ago, he told me that the pains i have been experiencing do not match the MSK symptoms, and is making me undergo more tests to find out if i actually do have MSK!

So now i think i'm going crazy, is there actually something wrong? how can i stop the pain? i was given co-codamol, solpadol, and diclofenac sodium, two different painkillers and an anti-inflammatory, all of which did not help at all, the diclofenac actually ate up my stomach lining after a week. The pain is worse now, i don't know what to do anymore, nothing helps at all! And it feels like no one believes me, because my "symptoms don't fit the criteria"! I am so so so fed up,  everytime the pain comes i just feel like ripping my abdomen apart to actually see what is wrong with me! I just feel so alone in all this, at 18, i should be out enjoying myself, instead of which i avoid going out in case i start getting pains, which has happened before and i found myself near enough passing out in the middle of the street. My appetite has gone, i don't dare drink alcohol as the next day always results in me being bed bound, twisting in agony. I've been losing weight, and now weigh just over 110 pounds, i just feel really fragile, like i'm going to break down at any point.
If anyone is going through similar experiences, or knows a bit more about it, i would really really appreciate hearing from you. Thank you so much.
168348_tn?1379360675
Hi and WELCOME .. here is a good article in our Health Pages about the pain entitled Why Does it Hurt so Much, yet NO Stone?

http://www.medhelp.org/health_pages/Urology/Why-Does-it-Hurt-so-Much--yet-No-Stone/show/383?cid=185

So sorry you are going through this now.

C~
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