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

I was diagnosed with MSK 2 years ago at the age of 26, since my diagnosis I have had four surgeries, two ER visits, and multiple trips to nephrology and urology. This disease has taken a big part of my life away with the chronic pain it causes. I've also been told just to drink more water, or denied I was having pain, only to pass a stone 11 hours after that encounter. Please listen to the patients.

I signed

I was diagnosed w Msk when I was 20 yrs old, I am now 33. I struggle w daily pain, nausea and fatigue. The pain has gotten so bad I cannot work, I have kidney stones in both kidneys and constantly pass stones and get reoccurring uti infections from my kidneys. Life w Msk is miserable and its time we have a voice thanks.

Been dealing this disease since 2011 fatigue pain septic shock 12 procedures about 10 hospital stays this disease really gets me down and i know alot of my fellow Mskers can relate.

I don't believe anyone have to suffer with all that pain and suffering.

I have suffered with MSK for over 2 years now. 12 surgeries, 11 CT scans, 5 Urologists, 50+ trips to the ER and almost losing my job due to constant needs for days off and short term disability due to unbearable pain. Nothing has changed. I am currently on shorterm disability and worse then I was 2 years ago. Things need to change. Not one doctor I've met truly understands my pain and the majority of the time when I go to the ER because I've tried to deal with the pain for days and couldn't handle it anymore I was treated like a lier and a drug seeker. I am a single mother and all I want is help. I want to go days without out pain not hours. I hope by signing this petition it will show there are so many people out there like me and we deserve a chance to live a pain free happy life. To control MSK and for MSK not to control us. Thank you

I suffer from MSK and I know first hand how hard it is to get my experiences across to Drs and others!!!

I agree

i believe this needs to be studied more!

My daughter has MSK and suffers terribly!!

I have suffered with MSK since 2007, I am a medic and have never been informed about MSK until I I was diagnosed in 2007 after having an IVP after passing a Stone. My life physically and mentally has and will be forever changed by MSK, but I can't let that keep me from living my life but as most of us know it does and it's almost impossible to change the habit.

I was diagnosed in December with MSK. For the 6 months leading up to it I was in and out of the hospital about 3 times a month with a total of 20+ ct scans. I can no longer play much with my son and really have to limit my activity but I am constantly told I shouldn't be in pain unless I'm passing a stone. This simply is not true. People with MSK deal with excruciating pain on a daily basis.

I don't understand how someone can look at x-rays of kidneys full of calcifications and stones, but still say "good news, there's no obstructing stones so you shouldn't be feeling pain." What?! Can I put a bunch of rocks in YOUR body and tell you that it shouldn't hurt?

MSK IS a very painful disease that is very misunderstood in the medical community. I have been lucky in finding supportive physicians, and as a nurse myself, it has also been helpful to be able to give detailed explanations of the disease and my symptoms but this is not enough. EVERY physician should understand and have this knowledge. Awareness is key. I have had 4 surgeries in the past 2 years due to MSK, and have had the disease since I was 16. I am currently recovering from a PCNL, an open kidney surgery to remove tons of stones from my kidney. We NEED research and answers!

I have had chronic pain with MSK for the past 6 years. I have a lot of issues with getting the proper pain management in order to function. I suffer with some kind of pain almost every day. I hope that doctors would update their information with accurate facts instead of following the presumptuous outdated information.

My symptoms started 11 years ago. I have passed 150 stones and three surgeries. Many visits to the ER because I could not manage the pain at home. This last year has been the worst. Chronic pain daily with little to no answers. Please hear our outcry we want more research, have our disease recognized for what it really is.

Please help us find a way to be treated fairly, kindly, and with respect! We suffer enough from this disease- more research needs to be done!

Doctors need to recognize the fact that we are not "pill heads", that we are people who suffer chronic pain. Until you have thus disease and are able to understand what its like, then stop telling us that we should have no pain unless stones are moving. It's ridiculous and it's affecting us. We are living in pain, some days are worse than others but some days it's everything we have to get out of bed.

While my pain is not daily, I have often gotten pain that no one has been able to explain. Crying from pain that no one can see affects you more than people can imagine.

Fighting for our right. Drs need to understand our disease and the chronic pain we go through every day.