Medullary Sponge Kidney (MSK) Patients Unite - One Voice, Several Goals

I have MSK. I'm in the fight with you!

I was diagnosed with msk 3 years ago. Once dr's hit the count of over 150 stones per kidney, they stopped counting. I am on chronic pain everyday. My pain management dr doesn't any to see me anymore because he doesn't believe the pain is real. I need to find a new dr who will actually be proactive and not look down on me and make me feel like a joke. He just doesn't understand why lithotripsy isn't an option. I wish doctors were more educated on this disease. I feel for anyone in my position. Does anyone have any advice on doctors and what to do? I pass stones very frequently and have kids so this disease really impinges on my daily quality of life.

I ve had 6 surgeries the last one was unsuccessful and my doctor pretty much washed his hands from me , he said that there was nothing else he can do for me because its embedded in my kidney meat, and that I should not be having pain.because it is embedded but yet, I often will find that I see sand looking in the toilet after I pee sometimes.I have constant pain, and my pain worsen a couple days leading up to my period and durring my periods.I find that I been increasing my percocet intake now more than ever. But after 5 days straight I have to stop it for a day because the effects of it is not strong.I dont know what to do, my family doc agrees with my urologist and thinks that I shouldnt have pain, so what to do from here?we need more docs to be educated with this MSK as most of us live 24/7 with pain and constant UTI etc,,,

I don't know if anyone else has this symptom but I get what one would describe as anxiety attacks for days or even weeks at a time, not to mention terrible upper back and rib pain that goes into my armpits as well which sets off the feeling of anxiety attacks. My doctor tells me its all in my head and every time this happens tell me to see a shrink.

I too have MSK & pass 3 to 4 stones a month. I'm 38 years old but I've dealt with this since 16.

I suffer from kidney stone and uti and have for over 40 years.

My wife suffers from MSK.

I was recently diagnosed with this disease and would love answers!!

In less than 2 years I have had 26 stones removed by basket extraction and lithrotripsy. I have been septic 3 times from kidney infection and couldn't even get help at the hospital until I was barely conscious. The pain NEVER goes away. I urinate blood almost daily, but the doctors brush it off like this is normal. What about this is remotely normal?

I practically live in the hospital! between all my kidney infections and frequent passing of stones! life is very different from what it was before and sadly not in a good way!

Hello everyone I am along time msk patient I have flown to Michigan in 2008 and had surgery by Dr Wolfe. I was better until 2011 in when a local Dr. spoke to dr Wolfe and did the procedure here , I have passed several stones since then several infections in the last year I have been at an all time high with pain and kidney issues, I had 6 stone removed Jan 22 with bilateral stents. The pain had not eased at all last week I was hospitalized for the infection. I had 9 more stones formed bilateral. The kidney Dr will not treat my pain I see a new chronic pain dr on Friday and can only pray he sees this is a true condition !!

SOMEONE IN THE MEDICAL COMMUNITIES OF THIS ENTIRE UNITED STATES NEED TO FOCUS MORE INTENTLY AND WITH URGENCY ON THIS LIFE QUALITY AND COMPROMISING DISEASE ASAP. MY DAUGHTER SUFFERS IMMENSELY AND WE FAMILY MEMBERS REFUSE TO ACCEPT THAT MORE RESEARCH IS NOT BEING CONSIDERED A DIRE URGENT MATTER.

Please can there be more Research into Medullary Sponge Kidneys. Thanks

My daughter was finally diagnosed with MSK at 12 yrs. of age, after suffering over 3 yrs. from producing and passing multiple kidney stones since she was 9 yrs. old. Alot of good the diagnosis did, yes we know why she's forming so many stones, but she has been in almost constant pain since & her urologist keeps telling me "I can't tell you why she's constantly hurting, MSK does not cause pain. The pain could be from the stones moving, or maybe she's pulled a muscle in her back." Her general physician even put her on an anti-depressant because he thought the pain "is all in her head and she possibly is using it to get attention!" REALLY??? She has been hospitalized at least 8 times (since age 9) due to kidney stones, had multiple infections, and finally had a lithotripsy done on her left kidney in Aug. 2013. But she was back in the hospital 1 month later (on exactly her 13th birthday) passing a 6 mm stone in her right kidney. She was scheduled for another lithotripsy on her right kidney in Oct. to break it up, but passed it before he could do it. It's hard to see your child suffer, but even harder when her own doctor's do not believe her.

I have diagnosed with MSK for approx 10 years and I feel pain almost all the time.

Im 43 and I suffer w/Kindey pain due to MSK in both Kidneys. Every doctor I see says there is no pain w/this disease. I have stopped visiting the docotors because of this.Its been over 3yrs since Ive been and the pain is just getting worse.

I have MSK. I suffer from chronic kidney pain. I feel.like I am treated like dope head. I hate even going to the dr. Because its wrong to be treated like something you're not.

We NEED help!!!!! Someone PLEASE listen!!!

I have been battling msk my entire life. I FEEL ya!! Thank you for all you are doing it is greatly appreciated.

I am a sufferer of MSK. I have pain every day.