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From: "lealong7@aol.com" <lealong7@aol.com>
To: devics-spectrum@guthyjacksonfoundation.org
Sent: Tue, March 22, 2011 9:55:34 PM
Subject: Re: [Devics-spectrum] Today/Eyes/Spasms


Gracie

I'm praying for you - you've been going through so much lately!  Hoping this all passes for you! 

I'm with you and Shannon - its my vision that I really freak out about. I can handle the weakness, paralysis, etc far better than the blindness. I'm still haunted with what I "shoulda coulda woulda" done before to regain my sight but now is too late.

I've not been posting because for some reason I've been intimated by the new system - hopefully this gets through!  I gotta get back on the horse!

Hugs to
ya'll!!
Lea
Sent on the Sprint® Now Network from my BlackBerry®

-----Original Message-----
From: gracepdm@atlanticbb.net
Sender: devics-spectrum-bounces@guthyjacksonfoundation.org
Date: Tue, 22 Mar 2011 18:17:27
To: <devics-spectrum@guthyjacksonfoundation.org>
Reply-To: devics-spectrum@guthyjacksonfoundation.org
Subject: [Devics-spectrum] Today/Eyes/Spasms

Today whenever I woke up, I already had moon face from yesterday's steroids---it took
me aback whenever I happened to look in the bathroom mirror.  Eyes are still the same, maybe a bit worse than yesterday. It feels like my eyes are coated in Vaseline. 


Also today, some bilateral spasms of the hands.  Very painful.  It's surprising that they were bilateral and symmetrical as my tonic spasms present differently on each side.  Left leg burns and left hand stays open. Right hip and knee flexion, plantarflexion right foot and toes.  Right hand makes a  fist. Head and neck pull to right shoulder.  They're the same pattern every time.  Today though with my hands, it was not only bilateral but symmetrical.  I'm not sure if that is cause for concern or not.


The last time that I had an episode was in 2007, seven months after I started Rituxan.  It was my eyes, and was resolved quickly with an immediate Rituxan infusion and several days of SoluMedrol.  I'm hoping
that this is also resolved quickly and that my vision improves and stabilizes. I fear losing my vision more than any other aspect of this disease.


Also, I'd like to take this opportunity to thank Shannon C. for being such a close and wonderful friend.  She understands and feels the same way that I do regarding vision loss, having already lost the sight in one of her eyes.  Thank you Shannon for everything that you do for me.


Well, I'm off to bed again.  I have a reading assignment that I needed to complete for one of my docs, but obviously I can't complete it.  Only one chapter and an epilogue to go---so close yet so far away.

Gracie

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Spectrum is the new home of Devic's Support

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