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

This is a painful, lifelong disease.

Living in Canada

10 years ago Featured

My daughter was diagnosed at age 9. She had 16 stones in her right kidney and 20+ stones in her left kidney. She is now 15 years old and has been hospitalized for stones 10-12 times, has had 2 lithotripsy' s and she suffers in pain almost every day.

I deal with MSK everyday of my life and it isn't fun. I have 4 young children and they have to go live with there grandma for a few months cause my dr doesn't want to treat the pain with medication and it is very frustrating so I am going to go see him today and pleas with him and tell him that because of this pain I can't even care for my own children

2007 MSK patient

I too have this disease and it is painful for me. In a way that is disruptive to my everyday living.

Is there any help in Canada ?

i have this condition too msk nephrocalcinosisboth kidneys

I am a 44-year-old special education teacher.I have lived with MSK all of my life however back in the 1970s this rare condition was not really known. I live in chronic pain and feel like every time I go to the emergency room or even to my doctor that they think I am just seeking drugs. on several occasions I have been told that the only reason I was at the emergency room was to get drugs. There are numerous days when just getting out of bed in the morning is a struggle. I have had multiple lithotripsy's as well as a plethora of other procedures. A person should not have to live with such chronic pain and if they do have to live with it they should be able to access the medicines that they need to function on a daily basis. I love my job and I love my students but dealing with multiple absences I feel that I'm constantly having to defend myself in order to keep my position. It is my hope that research will continue to be done so that others like myself maybe able to access measures to live a somewhat normal life without the fear of losing a job andwithout chronic pain!

yes i have msk wince i was diagnosed at 17 and have been in pain ever since get around 7/8 atacks a yer and mostly pass the stones , but inbetween attacks i always feel nausia and poor appitite this is something we have to live with and not many drs know about it i mostly have to treat this at home and feel very unwell for weeks after an attacvk

I was diagnosed during my 1st pregnancy in 2003. I suffered with chronic utis when I was younger. However dr didn't do necessary testing like they do now when a child has any type of uti or bladder and kidney infections. I was looked at as if I was a drug seeker since the only issue was pain. I actually need to get lithrotripsy again and I'm in pain as I write this. Its extremely aggravating when this happens. Im so thankful that this was started and now I have people who understand what I have to deal with for the rest of my life. Thank you

My daughter has MSK and suffers from pain also.

I have MSK. I was diagnosed about 10 years ago. Up until 2 years ago I found out I have this on both kidney. I was initially told I only had it on one kidney. I've been seen by 2 other Neohrologists aside from the one that diagnosed me. None of them seem to know much about it. My own fam practice doc also doesn't know much about MSK. The pain is sometimes unbearable. I'm told Ibuprofen is not good for kidneys but what am I to do with this pain? Tylenol doesn't help but Mortin helps somewhat . I hope one day someone finds a cure.

I too suffer from this terrible disease ! I am only 23 years old and have passed a good 300 stones just this year , not counting on those prior . I have always and still continue to find the help that I as a person needs ! Its wrong and unfair ! We need to be heard !

I have had kidney stones. They are extreemly painful. I cannot imagine having them daily. My niece suffers daily. Please help these poor people with MSK.

I live in Canada, and it seems that no matter how responsible i am with medications, how much i try to avoid hospitals and my drs to live a normal life. I am judged. They say there is no reason to have pain, and i'm left in the dark. If i advocate for myself there's an issue becuase i'm doing thier job. if i dont advocate i'm lost in the system. My drs aren't giving me any treatment plans. they have given me narcotics for pain which help and i've recently started taking cannabis extract to help with pain as well. however the pain is almost the least of my concerns. I'm concerned about my body, about my kidneys. i have vitamin deficiencies, and am lethargic lately. I have stones constantly, may not be big ones, but i oh so enjoy peeing out sand. And infections are wonderful too. Only increasing the pain I'm in pain all the time, but no body will really get help. they treat them when they come, and other then that i feel alone. there's no preventive measures, just cope with the pain. If i'm not passing stones or having them stuck i shouldn't be in pain. This is crazy! All i want is to live a normal life with my children and husban, not this. I hate being limited in my days, and i'm sick of borrowing spoons! I don't even think Msk in canada is linked to chronic pain according to our system, as when i went in to pain clinic they were baffled as to why i'm in pain, even though i'm diagnosed with msk. I'm at the point where I want to make a difference for myself and others! and am wondering if there are already people doing this here in canada yet, and if you may know? Please feel free to email me! I hope we can get answers. there is no cure, but why do doctors have a right to almost refuse options that could help reduce infections and stones and in some places pain medication, based on their very little knowledge!

Living w my disease would be much easier if the doctors would be on the same page.

10 years ago Featured

I'm 25, diagnosed 6 years ago. I have a gfr of 55, meaning my kidneys only work about half as well as they should. I'm only 25!! What will it be in 20 years?? Doctors straight told me I will eventually need dialysis and/or a new kidney, now how is that benign??

I was diagnosed with MSK 20 years ago and have to many stones to count pass, two blocked kidneys that required surgery and a recent ct reflected that the advanced calcification has advanced even further. I'm in pain every day. The struggle is real.

If a famous person suffered with MSK the money would be available. I'm tired of being in pain everyday.