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

My daughter has MSK, a pretty bad case of it for over 10 years now. It has pretty much taken over her life. Pain all the time. Her record is a 32mm stone that she actually passed. Otherwise when she pee's it just looks like the sands of time. I really wish there were some clinical trials and research in to this, I mean this is what she has to look forward to the rest of her life. Oh AND IT IS NOT BENIGN like they say. Her GFR is 19-20 and creatnine 2.8-30 and CO2 always in the dirt..around 9-12. All of these are 100% kidney related. SOMETHING NEEDS TO GIVE!!!!!!

Wife has MSK and recurrent kidney infections from infected stones with antibiotic resistant biofilm. Sucks.

I am diagnosed with MSK in 2012 and suffered for UTI monthly. In 2022 I had laparoscopy for the stone come out and block the ureter and cause my left kidney swollen. Now i just got treatment from UTI and experience so much pain in my back that make my daily routine is worst. I am 47 years now and still have to work. I hope i can get more information about these MSK.

I was just diagnosed and have been suffering with the chronic pain.

I too have MSK. I was diagnosed at 23 I am now 63. I too can attest that this petition is exact. PLEASE do more for us.

My wife has MSK and has been suffering with pain, recurrent infections and several hospital admissions. Thank you for much for offering a peti

I have MSK since I was 31 I'm 64yrs now and their has to be something or someone to help and cure this I can't live with this forever!

I have suffered with the symptoms of this disease since I was a baby and started with chronic UTI’s. This is a progressive disease that I have figured out how to function with at the age of 46, but still suffer on a daily basis from the symptoms. More research is necessary for this disease, how it impacts the patient’s daily life and how to relieve their pain without narcotics.

I just found out I have this. Im 30 years old. It hurts.

It is painful!!!!!

I hope this moves things in the right direction

I also have MSK & Renal Colic, and I’ve been in Stage III Renal Failure due to this disease for about 15yrs now.. I got very sick while being pregnant 19yrs ago.. All ER visits are horrific horrible pain.. My BP in May 2020 when I went into ER (and I’ve gotta hurt very bad to go) was 158/108 that’s how bad I was hurting.. As most ER Drs have been great but I got a Nurse Practitioner (yes I do see a pain dr) but every so often about 5 times a year my right kidney gets so tight (like a Charlie horse) There needs more study on this and less being labeled a junkie! Thanks for the info.. God Bless Us All~

I was diagnosed with MSK 5 years ago but do not have pain at all from it. Maybe I'm lucky but I need to know more about this disease pain or no pain.

I too have Medullary Sponge kidney disease and am in a good bit of pain much of the time. I was diagnosed in 2012 when I was 44 years old. I also have pretty severe nephrocalcinosis.

Diagnosed in 2017 with MSK. Riddled with gravel and stones, a few small cysts to kerp interesting. Pain is every day occurrence one not easily handled. My urologist has told me that couldn't possibly be in pain from MSK. How WRONG he is. How can I help?

I too have MSK. Hurts like a ..... Thank you for all you do

Diagnosed with MSK about 12 years ago.

I've also been diagnosed with this disease in both my kidneys and suffer horribly in severe pain everyday all day long ,and cannot even function or live a normal life and am forced to suffer greoviously because of the laws against opiods here in WV .Its cruel that pwople who need pain medication are forbidden it by law I'm 40 years old both my kidneys are full of stones I had 11 sugeries in a year and a half! I almost wrecked my car trying to drive I'm forced to suffer because I have this disease! I'd rather doe than continue to live this way !! I would not wish this disease on my worse enemy! Something has to be done before people start committing suicide just to escape this disease! There is no cure for this disease! We are forced to live torturous lives because we were born this way and cannot be cured !

I didn't even know this existed until yesterday when I got diagnosed. I'm in severe pain. They say it's not related. How can it not be?

I have MSK and we need more Dr's to understand just what we do go through! And to understand that stones/calcification does hurt even if it's not moving!