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Superior oblique myokymia[email protected] 
  
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All Message Boards : hello from a returning member
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From: MSN Nicknamepinksandels  (Original Message)Sent: 9/17/2008 9:28 PM
Hello , I am a returning member.  My old ID was tammyjennings.  I hadn't signed in in so long I forgot my password and had to renew my membership.
 
I was diagnosed about 3 years ago.. The first neurologist I went to was convinced I had Myasthenia Gravis (MG). As a nurse practitioner, I know this diagnosis can be devastating.  I started the medicine , Mestanon, which is a treatment for MG, by the third day every muscle in my body felt like lead.  I thought I was dying for sure.  The physician I work for set me up with another neurologist who says, 'This is not MG but I don't know what it is".  She sent me to a neuo ophthamologist..He said , "This is Superior oblique myokymia".  I was thrilled I wasn't dying.
 
Long story short.. It took me 1 month to feel somewhat normal.  That Mestanon threw me for a loop.. I feel great now.  My SOM is still there but I know like things could be so much worse.   
 
Sorry I've been gone for so long.


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 Message 2 of 2 in Discussion 
From: judsSent: 9/17/2008 10:23 PM
Hello, Tammy!!!  I don't know where everyone is lately, but we are finding that our site is much quieter than usual.
 
Whilst many of us have gone through the testing to rule out MG, I had forgotten that you were actually medicated for it.  What a nightmare that must have been for you.
 
So, Stranger, what have you been up to?  Any antics that we should know about?
 
Anyway, glad to have you back amongst the twitchy.