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Real members of MyKidneyDiseaseTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

I was diagnosed with a very rare sponge kidney disease and told i had cysts inside.I see a different primary care and the cysts outside.

A MyKidneyDiseaseTeam Member asked a question 💭
Punxsutawney, PA
January 20
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A MyKidneyDiseaseTeam Member

I haven't seen a kidney dr since my diagnosis in Topeka Kansas in 2013 and I was told I was born with the sponge kidney disease. Polycystic kidney disease has never been told to me but it involves inheriting it and Noone in my family om either side have kidney disease. I had 5 kids and my youngest was 3 when I later found out. Both I and my family never knew. Does this mean i may dialysis soon
I've had failure almost twice due to other reasons but I was early 30s when I found out and just turned 43 on January 4th. I was supposed to have surgery for breaking my back where my degenerative disc disease is 2 years ago and relearned how to walk at home on my own
Now my back has been in the worst excruciating pain ever. I get dry mouth constantly. Could my kidneys be an issue making my back hurt worse and my mouth so dry? Should I be worried?

January 20
A MyKidneyDiseaseTeam Member

Yes most definitely i have polycystic kidney disease and I've had a lot of pain and kidney spasms from kidneys being bad im now in end stage renal kidney failure and on dialysis due to all the cysts on my kidney shutting them down. Im sorry you have to deal with everything going on and you have any questions just ask if i can point you on the right direction and help ya in more willing to do that i wish i knew everything i know now about this horrible disease because once it gets where im at its a whole different way of living and is very hard at time so i wish you the best on your journey with this kidney crap and wish you the best on your journey thru this lifestyle 🙏🏼❤️#DAILYSISWARRIOR

August 18
MyKidneyDiseaseTeam

How can you clarify conflicting information about cyst location in your rare kidney disease?

It sounds like you're getting different information from different providers about where your cysts are located, which can be really confusing and frustrating.

Medullary sponge kidney is a rare condition where cysts form in the Show Full Answer

How can you clarify conflicting information about cyst location in your rare kidney disease?

It sounds like you're getting different information from different providers about where your cysts are located, which can be really confusing and frustrating.

Medullary sponge kidney is a rare condition where cysts form in the collecting ducts inside the kidneys. However, there are other rare kidney diseases that involve cysts, like polycystic kidney disease (PKD), where fluid-filled cysts can form throughout the kidney tissue.

The difference in what you're hearing might come from:

* Different interpretations of imaging results
* Different types of scans being used
* Possible presence of more than one kidney condition
* Miscommunication about medical terminology

What you can do:

Request copies of all your imaging reports and have them reviewed by a nephrologist (kidney specialist) who has experience with rare kidney diseases. A kidney specialist can help clarify exactly what type of rare kidney disease you have and where the cysts are located.

If you haven't already, consider asking for a referral to a nephrologist or rare disease specialist. They can provide a more definitive diagnosis and ensure your treatment plan matches your specific condition.

Getting a second opinion from another kidney specialist can also be very helpful when dealing with rare kidney diseases, especially if information seems conflicting.

January 20

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