I was diagnosed in June 2013. The first attack occurred in 2005 after the birth of my daughter in Feb. my right eye got very swollen & Dr.s could not figure things out. I went to a few specialists and was getting clue to having surgery. Finally, a Russian Dr. Stated it was a clog in my tear duck. The pain and swelling went away. Then 8yrs later the pain came back but no swelling. This started in April 2013. I was prescribed steroids and it seemed to help until the pain moved down to my lower back. Had to schedule appts with Neurologist had MRI Cat Scans nothing showed up pain got worse. Ou ended up going to the ER 3times and no help. They didn’t know what was going on. I saw the Neurologidt on a Thursday by Sundsy my vision was almost gone and weak limbs. I fell out of the shower and my husband had to dress me to get ready to see the Dr. On Monday. There was a mix up scheduling the appt with the Neuro. My husband begged him to please see me. The nurse saw me and couldn’t believe her eyes. I was now blind and paralysis started to worsen. Thank god he took me in and canceled the rest of his appts. Dr. Schaeffer admitted me into the hospital that day did spinal tap and started running so many tests. Dr.s here in Amarillo, TX had not seen this before I was now blind and paralyzed from my neck down. The pain was unbearable and my body was contorting in so many directions. On the second day in ICU I got respiratory failure. I was put on a ventilator. Then Dr. Stated they could not help me and would have to get flown to Dallas,TX. Dr. Greenberg at UT Southwestern agreed to take me as a patient. Once there plasma treatment started with no improvement. By then the lesions on my back were very visible and growing by the second. More tests revealed the lesions were now going up to my brain. At this point plasma treatments were not working and now I’m still blind, quadriplegic & on a ventilator. Last option was to give me three rounds of heavy Chemo.of course the side effects I had there were not seen before. Slowly but surely my index finger started to move. I also started seeing light and learned how to breath on my own again. I came home in a wheelchair on Oct. 2013. Recovery has been slow, but I can now walk and vision has returned about 35% still have double vision, no depth perseption and no light comes thru. I am still in pain all day everyday can’t feel my left leg but happy the Dr.s didn’t give up. I get blood work done every month and Rituxen every 6months. So far attack free for 2.5 yrs.
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