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.