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

I have msk. I am so tired of being labeled a drug seeker, because of the title I fear ER's. I am more educated on msk than DR's.

I suffer with this disease

I have MSK with symptoms since 5 years of age of UTIs. Then x-rays revealed calcifications in all kidneys (I also have duplex right collecting system and total hemihypertrophy). In 2014 at age 16 I started having stone obstructions and painful flank pain with pylonephritis. Hospitalized with stone pain and kidney infections 8 times in an 18-month period with each hospitalization lasting 5-7 days. I had to take credit recovery classes in summer in order to graduate high school because I missed class time medically excused. I also missed my graduation due to another kidney infection. I have had to postpone my college start date du to a recent hospitalization where I passed 4 large stones.

MSK is a constant struggle and can be very painful, the medical field needs to updated and educated.

I Really wish someone would hear my tiny little voice over the chronic pains that has now consumed my life. No one takes mask seriously, something has to give.

#MSK

I have MSK and it has been difficult to find any doctors. I want to see a kidney specialist who might know more but my urologist is insisting that MSK is not a disease and there is no reason to see a kidney specialist. If anyone knows a good doctor in Texas please email me at [email protected].

I was diagnosed when I was 19. About 4 years ago was diagnosed with gastroparesis. Then a year ago with SA Node bradicardia and had a pacemakers placed along with mutton valve prolaps. God bless to those who suffer.

I also have MSK no doctors care to help me!..I'm looking for answers myself

I suffer chronic pain with my MSK and am really struggling finding a doctor that even believes me or is willing to help at all.

I have been suffering with MSK my hole life and both of my daughters have it as well. I have seen urologist that have never even heard of MSK, they have had to look it up. Things desperately need to change.

I have MSK....I can be debilitating. I'm okay right now. But always a dull pain in kidneys...sometimes sharp stabbing pain.

I have been diagnosed with MSK, confirmed through ultrasound. I have suffered with incurable UTI and kidney infections for at least a decade, and have hundreds of stones embedded in my kidneys. I deal with searing pain daily. More research definitely needs to be done on MSK.

I have been dealing with the worst of the symptoms of MSK since 2007, I have seen so many specialist, had to have a major surgery which ended up only making things worse and after working since I was 15 yrs old I finally had to except that I was no longer able to hold a job with a college degree in the medical field because I am admitted to the hospital for horrible kidney infections causing high fevers, dehydration, n/v, and horrible pain. I have been on disability for the past 2 years and I am only 31, a mother of 2 young boys, and a wife, which feels like I can't be any I those most times and am sick of being in pain and people asking "how I am feeling" instead of "what have you been up to".

I have m.s.k.. I live in England. The pain is daily, deep within me.. I have stone removal but this only rids me of stones floating, not embedded clusters.. Doctors dismiss you and look at you like your a drama queen..

I'm a 47 year old male and have MSK. I do hope more research will occur to help find a cure or manage this disease. Thanks, Mary, for your work.

Glad u finally found out what's wrong.

do it.

I love you Andrea!

My friend SUFFERS with this wretched disease - it is NOT benign.