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Old 01-29-2013, 03:27 PM
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AynaDee AynaDee is offline
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Join Date: Jul 2010
Location: Illinois
Posts: 266
10 yr Member
AynaDee AynaDee is offline
Member
AynaDee's Avatar
 
Join Date: Jul 2010
Location: Illinois
Posts: 266
10 yr Member
Default Lost. Frustrated. Concerned. Confused.

Hello everyone..

I am at such a loss and have been given the run around.
Im about to give up.

recent flare in beginning december-optic issues consisting of eyes jumping around, pain in eyes, inanimate objects moving, double vision, partial loss of sight, color differences.
Pretty obvious signs of ON.
Much worse than the very first time of ON back in '06.

& this time it was both eyes.
Was seen by my pcp who sent me to er.
Had 5 day IVSM followed w/ prednisone taper.

Most has improved.. Except the horrible pain in my left eye when i move it, double vision out of side view, depth perception is off by alot, sensitivity to light, and the headaches.

Been off of steroids for over a month..
Should this still be happening?
I am still unable to drive per all these issues..
Been trying to get medical help, but pcp wont sign the referral for whatever reason..
What worries me, is that this is how everything started off and within 2 weeks everything spiraled out of control.
Is this the new normal? The same flare? Or another flare thats preparing to take me out again?

Last night I had another episode in my sleep where I shoot straight out of the bed feeling like Im dying for 2-3 minutes, then burst into a hysterical laughter (even though nothing was funny and I was sitting there terrified) and that happened 3times last night, making me terrified to fall back asleep.

I just dont understand any of this right now, nor do I have any clue what I should be doing... Aside from wearing sunglasses in the house.. That does help dull a lil pain..

any advice for this situation would be greatly appreciated
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