Ta-Dah: An Answer (Not)

edited Nov 1st 2013

Opsoclonus Myclonus Syndrome 

aka: Dancing Eyes, Dancing Feet Syndrome

I’d been slightly symptomatic all Friday morning, but trusted God whether or not I’d be symptomatic in the dotctors’ presence. I went through hours of waiting and intense testing. I’d explained my history and presented video evidence several times. Then, right before a basic ‘follow the red paddle with your eyes’ test, I wheezed, just a little one, but I knew what this meant: the eyes were soon to follow.  And it happened. In the midst of following the red paddle with my eyes, they started dancing.

Dr. L put down the paddle and, with his smooth Australian accent, said, “What’s going on What could be happening is Opsoclonus Myclonus.”
He went on to explain the causes (which sound absolutely lovely in an Australian accent):
A) paraneoplastic (cancer) = find the tumors and eradicate them
B) parainfections (infection) = corticosteroids, ACTH, etc.
C) idiopathic (unknown) = continue to deal with the symptoms
For me, the symptoms started when I had a case of Mono, so I’m leaning toward “B.”

Dr. L was quite interested in the videos and insisted I send him copies (the video person was out for the day) so that he could show them confer with his colleagues–including his mentor who is a world-renowned expert in eye movement–not just an expert in the United States, but in the world! How’s that for God setting me up with the best!

A vial of blood was drawn that will differentiate between tumor or infection and was sent to Mayo for processing (11-21 day turnaround).  Dr. L will call once the results are in to determine the next course of action.  

Here’s a video of my Dancing Eyes (which appear as though they’ve forgotten their choreography).  I was awakened at 2:30 one morning with a racing heart, huge itchy patch that nearly covered my entire foot and, of course, chaotic eye movement…this is not Dancing With the Stars.  Well, maybe it is, I did get the USP Walk of Fame award last night (busy weekend).


“I’d like to present to you: Lisa and her ‘Dancing Eyes’.  I hope you enjoy the show.”

2 comments

  1. Wow. Praising God for putting knowledgeable and skilled physicians in your path! Continued prayers for wisdom for the doctors and conclusive lab results from Mayo so that they can know the best path to take for treatment.

    WOW! You look absolutely stunning for your award, my friend! Wish I could have been there!

    Like

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