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MSK (Medullary Sponge Kidney Disease) User Group
MSK AND PAIN
About This Group:

This patient Support Group is for discussions relating to MSK (Medullary Sponge Kidney Disease). If you or somebody you know suffers from MSK, you've come to the right place to give, get, & share advice about this oftentimes painful, uncommon disease. WELCOME to our GROUP ~ We're Here to Help!

Founded by ChitChatNine on September 22, 2009
37 members
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MSK AND PAIN

MSK, for many of us, can be a chronically painful, difficult to understand and treat disease.  Since many of us
have chronic pain even when there is no stone in the ureter and or no infection shows on standard UA test
this can make treatment frustrating for both patient and physician!  It is my hope through this site that we can encourage one another, share information and research and find solutions together!!  Life is full of hurt!  So our desire is for this board to be an oasis where patients can discuss their pain, sorrow and receive support,love, education and encouragement!

I hope you will come along and work with us in this goal!

It is only together that we can make a difference for MSK patients now and in the years to come!

Shelly
3 Comments
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Welcome to our MSK Community .. most of our members have MSK with or without stones, but one thing we all share for certain is that we suffer from MSK or have family, friends, or loved ones with this condition.  It's a wonderful place to help one another, and perhaps, along the way, make a new  friend or two.

C~
MSK with calcium oxalate stones



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I'm a 31 year old mother of four.  I've never had stones until a year and half ago.  Since then I've passed countless stones and had lithotripsy once.  I understand the chronic pain.  I just chalked up my pain to malformed kidneys.  I WAS WRONG!!!  Two weeks I began passinf large wormed shaped blood clots.  I called my urologist and he scheduled ivp.  I have papiallary necrosis.  Yes, part of my kidney is dead and I was passing tissue.  MSK puts you at an increased risk for this.  Then add OTC or rx pain med and you've got a deadly combo.  Our kidney cannot tolerate constant use of nsaids ot tylenol which is in all pain pills.  Please be careful.  I know the pain is terrible, but this can lead to kidney failure and dialysis.  We're trying demerol for acute phaseof necrosis, but I pray the pain ends soon.  By the way, the diagnostic test for papiallary necrosis is a retrograde urogram and this is mistakenly diagnosed as chronic lowgrade polynephritis a lot.  Get an experienced urologist who listens. I thank ]od for mine.
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Hi all.. I'm 34 & I was diagnosed with msk about 3 years ago. I rushed to the doctor thinking I had and STD or my appendix. The Doc thinks its a Stone. 2 days later my Back been hurting like crazy & my left leg felt numb so I go to the Doctors & he said it was a pinched nerve. I was so happy to know my kidneys are fine.
I go to the urologist on thursday & friday I go for my sonogram. Wish me luck. Xoxoxo
YVette
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