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

I have had this for years while the drs look at me like I'm insane..wee need help

Thanks mikey luv ya my buudy

Thanks my friend john arbeu lol....

11 years ago Featured

I'm 34 years old. I have been passing stones for 25 years. After turning 30 it got exponentially worse. Currently I am on a week -two week cycle on large stones. Counting all the small ones and I'm well over 30 passed for the year.

Thanks to all my friends that signed . Lol...

Thanks sharon lol...

Thanks bill lol...

Focus is needed on effective treatment for this disease

The more I research the more frustrated I get. This pain is controlling my life, thankfully...hopefully this petition will result in more research.

thanks lisa if I was there I would give ya a big hug.. lol

Thanks to all of you from onicon im touched.

MY WIFE SUFFERS FROM MSK NEEDS TO HAVE MORE RESEARCH ON THIS DEBILITATING DESEASE

I have MSK and want to raise awareness for this disease so more research can be done so all the MSK patients sick and suffering in pain all the time can have a better quality of life....

Liz Herman I have been suffering with msk I was diagnosed at age 35 now 46. Always in pain had lithrotipsy twice have stents , once a single stent in left kidney because I had several stone that were large one measuring over the size of a quater in my uterer which was severly painful and shut my kidney down cause me to have a sever infection which hospitalized me because my white blood cells were dying on cipro sll the time cause of infection never can get eell enough and then another incident arrives now bilateral stents because once again lots of stones to big to pass keep gettin lithotripsy which is causing damage to my kidneys now I have very hi blood pressure due to renal hypertention now on blood pressure pills that arent working have to go see heart specialist to find out if I have a artery to my kidney that is damage hi blood pressure is because my kidneys not recieving enough blood which is damaging to the kidney and other organs this has made me very upset and scared of losing my kidneys, it is now put me in yhe position that I will lose my job soon with 1 more episode just had lithotripsy in june 19 2014 and just found out yesturday already have big stones again I know where thats goin my doc says im developing tons of stones and fast thete the hardest stones to break calcium monohydrate oxcolate ive change my diet which wasnt bad to begin with im a health concious person but I feel very sadin that im not gettin any better and worried if I lose mu job then what how do I get treated want to apply for disability but gettin discourage of what im findin out tjeres much more I could say but I would love to sign this petition someone tell the link to go to to do so I feel that these doc atent educated enough...my heart goes out to all the msk patients out there and this disease needs to be classified as disabilitating and more research needs to be done .....

I also live with disease and not much help has been offered.

I have MSK.

My Friend has MSK. He is 27 years old. Unfortunaltely his case has been different to you all have said in your video. HE has blocks of stone in his both kidneys with a history of 17 years. stones remained as it it but now slightly increased. With reaction to strong antibiotic he has CKD and now need kidney transplant. looking at you r messages seems that someday those stones will cause symptoms like you have experience but sadly in this case he also has to fight transplantation. This is really a horrible pain. Doctor's need to consider and research in this case. Help pole come out of pain and suffering and live.

Recently diagnosed. Would love to see more care give in this.

I have MSK and experience pain frequently. I can only get help if a stone has moved to the ureter. It is frustrating and disruptive to my life.

Hi. I was recently diagnosed with msk. I have been trying to find research on the disease and get the same general information and it is not very helpful.