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

my daughter --and me, too -- happy to sign, help in any way I can.

I dont take pain meds often for my MASK but that does NOT mean others can lead normal lives without it. Its ridiculous that someone else is allowed to tell us how much pain we can have with one disease.

I thank God that I have finally found someone who I can share my experience with in dealing with this MSK. I too, thought I was alone and for those who do not understand the condition or have dealt with it, will never understand unless they have an open mind and heart... Thanks Mary for sharing your story. May everyone out there with this, be blessed....

I have stones all the time. I live in California and I get seen at Stanford Medical Center. They do have some doctors that know about MSK. My only problems are I pass stones a lot and I have sever chronic kidney pain. Most of the time it's my left kidney. Has anyone ever pass stones and not had blood in their urine? Most of the time my kidneys feel like they are on fire! The doctors always tell me you have no blood in urine and no infection. So why do the kidneys hurt so bad? The only thing my doctor has me do is not drink alcohol, take potassium pills and drink lots of water. I don't think the pills help at all. Can anyone give me some advice they may have been given.

I'm 33 years old and I was diagnosed with MSK five years ago. I live in California and I have problems with chronic pain as well. I too have problems getting the right meds when I need them either prescription or at the hospital ER.

I have been diagnosed with MSK aged 55yrs after a lifetime of uti's and pyelonephritis in my teens... I beleive there needs to be more research In to this condition to educate professional, to confirm that sufferers do indeed have pain, and to further treatment to prevent worsening.. There also need to be research into genetic factors,

I have chronic pain with MSK. It's very hard to get reasonable treatment for it because of regulations on pain management. Many doctors do not believe this disease cause pain.

Any disease especially ones that affect our children is saddening to hear about or watch. Please put research money into this and help find answers and cures.

My daughter has this disease and I watch her is pain all the time.

I share your pain.

i have this disease and suffer with no way to treat the constant pain

I was diagnosed with MSK in 1998. I have since suffered atleast twice a yr with constant kidney stone ranging from small passing stones to 5mm 9mm etc. constant UTI's kidney infection, bladder infections & Drs who simply are not aware of these disease. Last year I suffered from massave calcification that not a lithotripsy of various could tackle.. Drs totally tortured me and had no idea how to treat me... Im sure if i can mention what hospital i went to..the first thing they did was place a stent( that hurt) they scheduled a surgery to remove the massive stone, radiologists tore into my back and retreated baffled at what they saw... Scheduled another date with a more experianced person... When they finally got to operating they wrere able to remove two tea spoons of stone but could not get it all. They sent me home with an internal and external stent and catheter to heal for a few weeks, within a week i was in excrutiating pain worse than before, exhausted all of pain meds and was i couldnt have anything for pain , maybe thought i was a junky... I was in severe pain and went to the ER 8 times in five days and was discharged with no diagnosis, they did not know what was wrong... They only gave me morphine and sent me home which lasted about 2 hours and i was back in pain. My last visit to the ER we contacted the Hospital Ombudsman to admit as there was sinething clearly wrong... I still have more procedures to go as the most of the stone calcification was still there.. I begged to have the nephrostony removed as drs suggested it was kinked or that i had a muscle spasm... They removed it and tried to discharge me again but the pain was no worse. I thought i was going to die... 8 days past in the hospital still in pain on morphine dilauded every 3 hours, still no idea what was wrong... At this point diabetes uncontrolled, anxiety was setting in and my veins would not hold IVS anymore and nurses had a hard time finding my veins, i was diagnosed with PTSD... Scared to de

I have MSK and when I have to pass a kidney stone it is excruciating pain, 5 weeks ago it took me 8 days to pass a stone, this morning I woke up with another episode only on the right side this time.

i Suffer with MSK, live in the uk and it is not rekonised at all not treatment is offered and have now ended up been referred to a phycologist as im apparently addicted to painkillers as i shouldnt feel pain! hope things change!

I was just diagnosed with this yesterday! I have nothing available on this disease. All I know the pain is terrible and everything I'm going thru they don't have a cure or medicines to help it I'm 35 and wish for help of understanding what this completely means or intells please let's get the information and let the world know!!

My wife is a MSK WARRIOR. I say warrior because she fights every day dealing with physical and emotional pain and stress. We have two small children and MSK has nearly taken all the enjoyment there is out of being a mother and wife. This disease is chronic and excruciating. MSK doesn't just affect the person that has it, it is something that affects all close to that person. MSK is grossly unrecognized and needs to be brought to the attention of many. I feel that there is a lot to be done for MSK AWARENESS.

Praying for a cure:)

Hi I'm a 30 old women with msk disease I'm in Chronicle pain everyday, even with the pain medicine that my neurologist give me , I still suffer everyday with pain from this disease

I also have MSK accompanied with 2 others.

Thanks darlene luv ya my good friend....lol xoxo