Do you know anything about Meduallry Sponge Kidney Disease?

Question

What do you do? Where do you get more information on this subject? What do your doctors say? Do you have trouble finding a doctor with knowledge AND concern for you & your symptoms & pain?

emmy1994 · Answer

im 17, i dont know what to do for pain with my MSK. the doctors keep telling me im just imagining the pain or making it up. i have pain with/without kidney stones and i honestly dont know what to do. i rest and drink water i tried ibprophen but for this much pain....it does not do anything

kimberlyfra · Answer

Thanks for replying! Hope to hear from you more & learn from you & the others. I do have so many stones in both kidneys that they cannot count them all! Some are embedded & growing larger too. I have calcium oxalate stones & lately calcium oxalate phosporus stones. I wnat to hear from fellow friends with same disease & problems, but where can I also get data from the medical community for answers from them? To google just doesn't come up with any real answers.

ChitChatNine · Answer

Kimberly,

WELCOME to MEDHELP and please come on over to the MSK Community.  I've been diagnosed for 3+ yrs now but have had symptoms for 30+ yrs.  Please know you are not alone and we all have so much to offer to help you gain insight and knowledge into this rare anomoly we all share.

Do you produce stones?  Many of us do, some do not --- but we have been through a lot and together we can all help each other and make a difference!

MSK Community:
http://www.medhelp.org/forums/show/256

C~
MSK with calcium oxalate stones

kimberlyfra · Answer

You are a godsend! I cannot wait to look further into the community site & read everything & learn from what you all have lived thru & experienced! Thank you for alerting me to this forum!
Kimberly

MSKshelly · Answer

You are not alone in your pain or your struggle to find a doctor who acknowledges your pain with MSK or information on it.  However here on Medhelp we have a support forum just for us, just for Medullary Sponge Kidney disease patients!  I think if you come over to our forum and read the health pages you will find the answers, support and friends you need!

http://www.medhelp.org/forums/show/256

I personally want to invite you to come and join us, and also welcome you to Medhelp!
I am kinda the researcher of the group.  Nancy is the Community Leader and does a far share of research as well!  I have lost count of the number of patients I have heard from on this board with chronic MSK pain even when there is no stone in the ureter or infection showing on the dipsticks!!  Again the healthpages that actually are share with this forum may unlock some answers for you as well!!

Hope to see you there soon!

Shelly