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Reply to CJTMN

Your post hit me like a ton of bricks! History, I am now a 43 year old female, mom to 4, European decent (white), I am on my 3rd round of Abducen's or 6th nerve palsy. The first episode was about Oct. 30, 2009, just a few days after my son was born. I had literally watched my pupil blow and turn my right eye completely black. The headache that came with it was beyond anything I would wish on my worst enemy or Satan himself! I went to the eye Dr. who thought first Aneurysm or brain tumor, because of the pupil, which little by little color was so beyond enhanced it hurt to use my eyes period. My right eye twisted outward and I was sent to the ER. I spent 5 days in the hospital with a multitude of tests, from MRI, CT scans with and without dye, blood tests, specialists coming in, they couldn't find anything. No LP was done since I had a ceasection and my son was barely a week old. This first episode lasted about 4 months if I recall correctly. It did resolve and life went on. The neuro Dr. dx me with optical migraines. Ok topamax has been my friend, keeping further radical migraines from taking over my life. In March/April 2012, I woke with my left eye turned inward..GREAT, here we go again! This time, I did have a headache, but because of the Topamax (Topiramate) it wasn't as debilitating or bad as the first episode. I knew what to expect as far as dizziness, lack of depth perception, but still scared, so back to the ER....They just said recurrent 6th nerve palsy with pstosis (?)....This episode lasted about 4 months as well, and luckily, no blown pupils or enhanced colors. With both, I did notice however, my vision was not 100% what it was prior to ever going through this. Both cases, I was eventually given steroids, but not sure what good they did. It is now, July 14, 2015 and I woke up July 9 with once again, my right eye affected and turned inward. No blown pupil, no major headache, but loss of depth perception, unable to drive because well, driving with one eye is a bit hard, wearing a patch helps a bit, but the dizziness is there. My family says my eyes don't look as bad as the previous times, but I can't look straight ahead because the focus drives me nuts. I did go to ER again, (every time, to have documentation "incase")...They immediately put me on steroids and Dr. said he highly thinks I have MS. Something RRMS, where it comes and goes and can happen without rhyme or reason. I have an appt on the 28th with my neuro and should be tested for MS. I am not scared as I have been reading up on MS like crazy, it's not terminal, it's chronic. Many with MS have the same life expectancy as those without. Just have to take care of myself. MS also affects everyone differently, can just affect my vision, or I have also noticed this time, my muscles ache something fierce.   Not sure if it's just me getting older, or what. My hearing in my right ear also seems muffled so not sure if this is part of something going on either. One thing I do know about this "episode" that I didn't seem to think about the last time, is this time, I just asked my husband if my eyes looked funny about 4 days prior to waking up with the crossed eye. He said no my eyes looked totally normal, I also felt like my eyes were cloudy and a tad gritty. Weird. Anyone else experience these symptoms? Hopefully this doesn't last months and goes away quickly. Prayer for each of you experiencing this awful unexplained mystery!
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Avatar universal
You have--as you well know--a very complicated medical condition.  It's difficult and a LOT to take in.

You might want to check in with an MS discussion forum and post some questions there.
Avatar universal
Thank you, yes, Dr.'s have stated "your one in a million"...I just want that "one" answer... :/
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