Discussions By Condition: Medical Errors

Droopy lid misdx

Posted In: Medical Errors 0 Replies
  • Posted By: Anonymous
  • June 23, 2013
  • 05:22 PM

I have had droopy eyelids for almost 10 years now. I had some relief in 2008 with lid surgery but back to severe ptosis. In Jan 2013 I was dx with OMG (ocular myasthenia gravis) and put on mestinon (brutal muscle cramper). After a little family history research, I found that several cousins had OPMD (oculopharyngeal muscular dystrophy). It is caused by a mutant gene that is expanded. My French Canadian mother passed it to me. Apparently, Montreal has the highest cluster in the world. Gene testing confirmed this dx. So in Apr 2013, I stopped the mestinon, but now while it's great knowing what's up, I'm on a quest for a cure. Gene splicing looks promising. However, I am facing an idiot of a surgeon who wants to shorten the lid levator muscles with the likelihood of not being able to close my eyes again. So, not! Thought this post might help others with mis dx and hoping someone has had beneficial surgery.

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