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

Diagnosed Jan. 20, 2014, Vancouver, Canada

i suffer with MSK and will do anything I can to promote more research.I agree with everything you've stated in this article.

I was diagnosed with MSK two years ago & basically told to "drink more lemon juice". I live with chronic pain and pass stones roughly every few weeks. It is truly miserable.

i to have msk,i had my left kidney removed due to pain,and am now fighting for pain relief ,because i inject myself with morphine for pain the majority of doctors look at me like i am a junkie and out for fun,it really gets me down to the point i feel like jumping off a cliff.

I have been diagnosed with MSK back in 2007, six years have passed and no information has been released nor discovered due to the iack of research

I also suffer with msk and the daily pain , and doctors that don't be live the pain , I get next to nothing for pain , time for this to change for all of us that suffer with disease .

Ellen I am so sorry to hear this :( hopefully we can get this petition going around and get some help. I can't believe how many have been treated like we are crazy. I always said I would not wish kidney stones on my worse enemy but the more I see suffering I wish our urologist could feel the pain and see what they would say after that. And with MSK disease its damaging our kidneys after so many lithotripseys so how do they think it is not painful? Prayers sent to you.

I also suffer with kidney problems and have had doctors to ignore me to the point that one kidney was destroyed. Kidney pain is very severe.

Thanks so much for caring Jerry :)

Lori Marshall thanks for taking intrest in this disease and signing for us!

Rosanne Kinder thank you so much for signing the petition and caring about all of us. Hopefully your wods and everyone elses will help us out :)

Aww thanks so much for the kind words Dixie Havens!:)

Kathleen do you pass stones all the time?

Pamela I am with you and its no fun! Hopefully one day we will get some help and understanding from Drs.on the pain. I get so frustrated when theey say well your full of stones again but they are not blocking anything. Well no kidding because that is a total different pain. That is more of a stabing pain. This from the stones moving around feels like I am being punched in the kidneys constantly and hurts to breath and feels like someone is squeezing and twisting the kidney they think I am crazy! Do any of you get these feelings?

Hi Kriti. I am so sorry that you have this disease :( you are so right this article explains nothing but the truth about how we feel. Sure hop you get some relief soon.

Thank you so much Angela Sharmer for taking intrest in our disease. You are always here for me and I am so happy that you have joined our support group and signed this petition.We need all of the support that we can get.

I have been dealing with this disease for 15 years but the past two and a half years has been awful! I have had 32 lithos and cystos the past two and a half years three renul failures this year and was told that they can't cut into the kidneys anymore to get stones out of the meat of the kidneys and that my kidneys are a mess from all of the surgeries. I am in constant pain in my kidneys every day and my life is on hold can't make plans or do things that I used to because of the pain and stones.My urologist all three that I have,told me that when I got in mid 40s I was gonna be worse and I am 48 and here to tell you the past few years has been pure hell! I hate being treated as a drug seeker when I go to the e r and they know why I am there but they don't understand that even though I pass a stone I am still in pain. They say MSK does not hurt. Well it is very painful I don't know if the pain is from the kidneys being damaged from the disease or what but I am in constant pain and like the rest of you know it is miserable and they need to stop saying this is a rare disease and research it and find us some comfort. The Drs know it will never get better and only get worse but they don't understand the pain. Please pass this to all of your friends and make it viral so maybe we can get some help:)

I am a sever Msk'er. This article explains the truth about how I feel everyday of my life.

I've had multiple surgeries and I'm in constant pain.

I was diagnosed with MSK in 1990 but have never had any treatment or guidance in dealing with it.