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MSK (Medullary Sponge Kidney Disease) User Group
Second Opinion at last!
About This Group:

This patient Support Group is for discussions relating to MSK (Medullary Sponge Kidney Disease). If you or somebody you know suffers from MSK, you've come to the right place to give, get, & share advice about this oftentimes painful, uncommon disease. WELCOME to our GROUP ~ We're Here to Help!

Founded by ChitChatNine on September 22, 2009
37 members
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Second Opinion at last!

Just had another opinion on my woes and intermittent renal colic.....and NO I don't have MSK according to the Urologist I saw just recurring stones and calcinosis. Anyone else had any good news lately?
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2 Comments
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1531898_tn?1292259805
Sounds like MSK to me!!! Never good news here
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489228_tn?1291535054
As i found in the last post I answered on here.  I guess I am not getting updates on this site but am more current on the other MSK support site here:
http://www.medhelp.org/forums/Medullary-Sponge-Kidney-Disease-MSK-/show/256

Notinagoodplace.. the thing is that it is the calcifications that make us are risk for biofilm infections etc.  There seems to me to be a tread of doctors who once there patients come here and become empowered with info etc., they simply then suggest well you don't really have MSK or YOUR Msk is a different kind then those of this board etc.  These are simply a doctor's way of shutting up the one with info !  Since many don't like to be shown up by a patient!  I will say there are also many doctors who do care and are willling to take this info to find a real solutions!

Here is a repost on MSK and pain that might help someone here too!





HI,  First of all let me say I am glad you found us here on MSK and I hope from the message board you have learned that you are

not alone and that your pain is real and there are reasons for you pain.  If possible and you live in the US, it makes it easier to

explain if we can actually talk via phone.  I have unlimited long distance and will be glad to call you, if you give me your number.

In the meantime you can e-mail directly at ***@**** .  I also help patients with IC support etc. and if you go to the menu

item for MSK, you will find an article I wrote on MSK and Biofilm infections. This will help you understand too.  

Also, on the Medhelp message board, go to the healthpages on the top right hand side.  Here is the link:

http://www.medhelp.org/health_pages/list?cid=185

If you go to the healthpages, look for an article on MSK and pain, treatment options. There is an article that lists the treatment protocols

that we have found helpeful and the safest steps for the doctors as well.  That said, though many docs are listening, willing to read the many medical reseeseaarch articles etc.  and at least willing  to do whatever they can to help their patietns, unfortunately there still quite a few that refuse.  So

If doctor is not one that willing to try to help you, keep lookng!

Hang in there and keep me posted.

Please feel free to contact me if you have any questions!  I will aslo try to e-mail you these articles as well.

Shelly
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