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

I've had this sence birth. I'm going to be 64 in May. I have more trouble with drs. Believing me. Right now both kidneys are full of stones,they say,when they brother you go to e.r. you can't even tell that they are kidneys due to only seeing stones. So what do you do. Vicci

I was told I had this after my second surgery and was then sent home....there is so little info on this and even doctors don't seem to know ... please help.

my daughter has lived with MSK for over 20 years in chronic pain

I've had chronic pain for the last years in my left flank. Three surgerys due to kidney stones and was diagnosed recently with MSK however doctor dismissed my pain. But now this makes so much sense and I am feeling a bit hopeful now that there is a reason behind the pain.

I am a MSK patient and this video couldn't be any closer then what I go through daily...I have a 3 year old and 5 year old and the meds I need to take to function and I'm tired of needing answers and don't want to be treated like an addict when I'm not..I went to college with a 95% average, I'm not dumb I know the pain I insure is real and not in my head and I've had 40 stones ranging from 8mm-16mm stones and 20 kidney infections in a couple years alone..doctors didn't know my disease so led to mri's ,ct scans,xrays, ultrasound and 6 months ago I was on iv therapy for a month and a half due to a kidney infection that grew to a blood infection... I need answers

I have pain constantly sometimes it is okay and other times it is unbearable

Recently diagnosed with MSK along with two other conditions that make it even more difficult to manage...I have been bounced around from Doctor to doctor and each time it seems that they truly do not understand the severity of the pain...I am 100% in support of this petition and I pray that we can make a difference!

I fight everyday! Remember there are no bad days, just some are better than others! Real pain makes you or breaks you!

My 2 year old was born with MSK , and it's very unpleasant watching her go through the pain. I wish there was more information on why it happens and how to cure it.

I SUFFER from Spongy Kidney.

I am 30 years young and have been suffering from the chronic pain of MSK for over 15 years. To be told that MSK doesn't cause pain without a complication when I'm in level 10 pain and refusing to treat my symptoms is one of the most disturbing things I have ever dealt with in my entire life. Chronic pain causes chronic depression. When I reach out and beg for help from those who took an oath to help the sick and are in turn treated like I have an underlying mental condition because there is "no cause for my pain" it breaks my heart and soul. To be at rock bottom mentally and physically, to no longer be able to live a normal life and then to be handled in that manner is absolutely inappropriate and I cannot and will not stand for this anymore. Something MUST be done.

I suffer everyday sometimes all day with this pain.

Since the age of 12 my baby cousin has suffered with this very painful disease. We have got to find out a cure to help her and everyone else suffering with the same pain. No one should have to experice what she goes through on a daily basis!

Please push this - my young niece was diagnosed and needs help!

Please continue to work for a way to stop the crippling pain associated with this disease. MSK is not a painless disease.

Good luck

I suffer from MSK, I have been dealing with it since I was 19 with my first stone. I am now 37 and the struggle has been hard. Doctors don't seem to know enough about it and say it isn't painful. We with MSK know it is. I was sick all my life and didn't find out I had the disease until I was 30. I have no one but my kidney doctors that understand. I found 2 wonderful doctors at the UofM but am losing one of them. No one really understands how hard this is. My doctor says they can prolong my life but in the end I know this will kill me. I have 6 children and I hate that I brought this into their lives.

I was diagnosed with MSK recently and am suprised to see the number of medicial staff who have a very confused look on their faces or have asked me what the heck is that! ?

I was just diagnosed with MSK. I was told my pain must be musculoskeletal!

Thank you! I finally found the information that made sense to me! I am not a pain pill junkie!