Nicole Barnes Story

In my early 20’s I was working when I noticed I had a bruise as well as a pain in my abdomen area. It elt like I had been doing crunches, and since I hadn’t I was concerned. I went to the hospital where they ran numerous tests and discovered I had something called ITP. My platelets were attacking my spleen and I was bleeding internally. They told me had I waited to go to the hospital or not gone at all I could have died.

In my 30’s I went blind in my left eye twice and once in my right. Each time happened about a year apart from one another. The first time in my left eye it was like I had a bold black bar across my eye and I could only see above and below it. The second time in my left eye my vision closed in. A cloudy circle closed in and everything through that eye looked angelic until I couldn’t see anything at all. Both times in my left eye it took about a week for the vision to go and a week for it to come back. The first time in the left eye it came back without medication (I had no insurance at the time), and the second time I was hospitalized. When I went blind in my right eye it just went away instantly then came back. It was not a gradual process at all. By that time I did not have insurance. Blue Cross had cancelled my insurance claiming I had not revieled my pre-existing conditions because I was diagnosed at the time as having Lupus.

In my 40’s I was on my was to work and noticed when I arrived that my vision was funny in both eyes. But late afternoon I was blind in both eyes and admitted to the hospital where I stayed for 18 days. During that time I was given steroids for five days, then spent another ten days doing Plasma Exchange. They performed a number of different test and discovered that I have NMO and Sjogrens Syndrome…not Lupus. They were able to restore th vision in my left eye for the most part (when I look through my eye it is like I am squinting), and my vision in my right eye is gone. A month later I was back in the hospital because of inflammation in my spine and my legs were numb.

I have begun taking Rituximab ad hopefully that will keep me from having flares as often. I am recovering from having burning sensations in my right leg and spasms in my right to the point where I could barely move. I am feeling much better now.

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