Medullary Sponge Kidney Disease (MSK) Community
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Any advice to someone that has been dealing with MSK for 2 years and suddenly my medical group doesn't believe me?!

I was diagnosed with MSK 2 years ago and have been to many doctors and specialists.  I've been on medication for about a year to try to help these stones stop forming.  It seems to be slowing them down but I continue to have pain and pass stones on a monthly basis.
I thought that I had an understanding doctor who supported me until yesterday.  The rest of the practice has doubts about the number of kidney stones that I have and the amount of pain meds, IV, zofron that I need on a monthly basis.  He told me that they now will need proof of a stone through a cathader urine sample and/or and ultrasound to see the stones.  If there is nothing there, they won't treat me.  My problem is that most of my stones are very small and don't show up on the cat scans much less an ultrasound...do I just need to tought it out at home with advil or doesn't anyone else have some suggestions....a doctor that specializes in these....anything.
I have 2 little kids and am trying to teach kindergarten, this is controlling my life!
2 Responses
1269632 tn?1297114302
That is insane! Where are you? The US? Here in the UK I give the Drs my stones and they couldn't care less. Also like you sometimes the stones are so small it's impossible to catch them. I only know I've passed them because the pain eases.
You must have rights, if you've been diagnosed then your body must have already 'proved' that you have msk. Sho on earth would want to pretend they were this ill? X x x
489228 tn?1291535054
Julie it is possible that your chronic pain is not actually caused by passing stones...
for many of us with MSK we have chronic pain even when there are no stones showing in the ureters or when there is no infection on the urine tests or cultures.  You will find all the info explaining these issues and possible treatment options here.  I just want you to know I have talked to 100's of patients just like you from around the world.  Read through the posts here and the healthpages and I think you will find your story written over and over in these pages.  OK, we may all very in age, economic status, number of children, single or married, race or male and female but the symptoms are the same over  and over and over.

Please, get a drink of water, put your feet up and read through the pages here....
go to the healthpages on the top right hand side of this page.  Then send me a private message and I will e-mail you some pdf articles to help you understand some of the issues.
If you live in the US, I have unlimted long distance so I would be glad to call and talk to you...
to explain what can seem hard at first and hopefully help to equip you to give your doctor the tools and resources he needs to be able to silence the scorners in his group that do not understand or believe you.  Keep in mind doctors are held to a very strick scrutiny when it comes to pain meds.  They also tell us what they are taught in mediccal school etc. about MSK etc.  in honestly most just don't know.  However since we have joined together and share info and resources I hear more and more doctor's treating patients and more patients getting some of their quality of life back!

Welcome and hang on!
Talk to you soon!

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