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Old 01-26-2008, 12:32 PM #11
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lady_express_44 lady_express_44 is offline
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Sorry to hear, Donna.

It is actually VERY uncommon to experience that extensive of an attack (to that degree), . . . and that was my very first indication of MS, 17 yrs ago.
If it's any consolation, I have not done steriods or anything when in these attacks, and I seem to have healed as quickly (and completely) as those that I know of who have.

You are right; PACE and be kind to yourself.

Cherie
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Old 01-26-2008, 12:49 PM #12
donnat521 donnat521 is offline
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I have had some very weird attacks. My eyes are affected each and every time. I have had ON 3 times in the last year and a half. I have problems with my extremities, so my Neuro was positive I had devics. I only show 1 area in my brain that could be considered a lesion and my neuro feels its more Migraine related. My spinal MRIs just show inflammation.
My neuro was convinced because of how extensive the damage is to my optic nerve that I was definately going to show antibodies for devics/NMO. I dont have the antibodies.

My first documented attack almost 3 years ago, I could barely walk and my eyes were attacked. About a year ago I had my 2nd clearly documented attack. ON again and Severely abnormal VEP results showing extensive demyelination,I can no longer drive now due to visual disturbances and my vision is pretty much completely gone in my left eye, , again no conclusive MRI findings. Abnormal neuro exams,MY EMGs were abnormal, My legs and shoulder area seem to be in constant spasticity. I tend to have longer than normal flares , as per my neuro.

The last time I was in for a visit, he shocked me abit when he said.. Well while we are waiting for those " tell tale lesions " to show up, Im pretty sure you are heading down a progressive path, because you arent seeming to go into remission. My LP showed inflammation as well, no O Bands. So he has worked me up for everything under the sun.. with nothing else being found. I was misdiagnosed with Lupus as well. I have been diagnosed and undiagnosed many times ... its a fun game! Except, the game never ends.

So I know this is a new site for me, alot of people from my old site know my story. Sorry I just kinda gave a rundown of my relationship with this . My neuro has me diagnosed as " demyelinating disease of CNS, unspecified" . He told me we are going to frame my MRI when it finally shows lesions . Because of my VEP , showing severe demyelination, but my MRI not. He is very confident the lesions will show up. Amazing that we are almost looking forward to them showing up, just to say YUP Thats what it is. A weird kind of resolve. Thanks again.
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