Medullary Sponge Kidney Disease (MSK) Community
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Life expectancy

What is the life expectancy of someone with severe msk?
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Medullary sponge kidney is a condition in which cysts develop in the urine collecting ducts and tubules of one or both kidneys. The exact cause is not known. The common symptoms are pain in the back, haematuria, excessive amount of calcium in the urine. Medullary sponge kidney disease may be asymptomatic in most people .Few people may have a UTI or kidney stone. UTIs and kidney stones share many of the same symptoms.MSK is suspected in patients with repeated UTIs or kidney stones. An x ray called an intravenous pyelogram can help confirm the diagnosis. No treatment can get rid of cysts in the affected kidneys. In a person who has MSK, treatment mainly focuses on curing existing infection, removing any stones if present and preventing future urine infection and stone formation. Dietary changes and adequate intake of fluids may be helpful. It is best to consult an urologist and get your doubts clarified. Discuss your concerns with your treating doctor and do write to me again.
Best luck and regards!
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I've been told that only 1% of the MSK population will have serious issues.
I have MSK, and that is incorrect, not true at all..My life and many many others lives are complete hell.. Many surgeries, infections and stones.
I agree with Shaybabe1 my life is hell with MSK!!! And I mean GELL!!! Caused me to have THREE YES THREE CHILDREN PREMATURELY!!!
I just found out I have MSK in October of 2017.  However I have had too many UTIs to count over my 30 yr life span.  I got them so often it caused two of my three pregnancies to be born early.
I was diagnosed 3 years ago I've had reoccuring kidney infections my whole life lower back pain fevers chills always thinking I had the flu and then come to find out when I was in my late 30s I had a massive blockage from Stone and what I thought was the flu was me actually extremely septic and dying that was when I was diagnosed. And told that I've had it my whole life. I didn't know why I was having problems until then and I was 39 years old

A month ago the same thing happened to me. Anywhere from now to 30 seconds from now I can be in the hospital from this and I know many many people that I've contacted over the years have told me it's a nightmare just like my situation
The last time I had an ultrasound on my kidney I was told I have hundreds of stones in my right kidney. And I'll be passing them my whole life.
we have a lifetime of infection stents and massive pain but no doctors really understand.
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