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 Message 1 of 4 in Discussion 
From: MSN NicknameSurelyD1  (Original Message)Sent: 10/30/2006 5:11 AM
Hi I am new to this board, and just learning about RSD.  I had a knee replacement in 3/04 aand had some things go wrong :o( ended up with what the surgeon called 'causalgia'.  I've had an epidural, then two series of nerve blocks.  The first series helped quite a bit, for three months, then it turned off like a switch.  The second series did nothing...  So the way RSD manifests now for me is really nasty muscle spasms.  It has spread up my right leg, into my lower back, across and down my left leg.  If I walk or try to do too much, these are some screamer spasms.  I also get the 'hot wire' across the right leg and the 'my covers are hurting me' on the left leg.  Seems there is only one Dr. with significant knowledge about RSD in this area, trying to get in to see him but he's not part of my insurance.  My primary care doc is a really nice guy but I think he's trying hard to stay ahead of me in learning about this disease.  He's put me on Lyrica which seems to help somewhat but makes me swell more and HUNGRY!  I can't afford to gain any weight, it makes for more pain after walking, etc.  I saw on a discussion board people were talking about "Stage 3", etc.  What is that about, and how do I find out where I am?  So is Stage 4 fatal, like it is in cancer?  This is a scary thing.


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 Message 2 of 4 in Discussion 
From: MSN Nicknamemirage_angel_hopeSent: 1/11/2007 2:48 PM
 hey surely
 it nice to meat you sorry about the late reply.The stages are more about you smptoms and where if anywhere it spread rsd is not fatal so you don't have to worry.Blocks can be really good with rsd patients if they work i'm glad they worked on you if only for a little while.I wasn't so lucky they never worked on me.
It really hard to find a good pain doc especally when you have to deal with insurance but it amazing that you doc cares enough about you to stay ahead of the game.
I look forwardd to hearing more from you asnd take care of yourself
love mirage

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 Message 3 of 4 in Discussion 
From: MSN NicknamecathieLOSent: 2/19/2007 4:51 PM
I was recently diagnosed with this stuff and the more I read the more panicked I become.  I do know our outlook has a lot to do with it.  That's easier said than done, however it can be done.  I read that the staging isn't done that much anymore.  There is a lot of information on the web about this stuff.  Unfortunately, not a lot of doctors do know that much about it and are afraid to admit their ignorance.  Do your own homework is my suggestion.  Wishing you the BEST.
Cathie

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The number of members that recommended this message. 0 recommendations  Message 4 of 4 in Discussion 
Sent: 2/19/2007 11:48 PM
This message has been deleted due to termination of membership.

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