Friday, March 29

First symptoms of NMOSD

I woke up and couldn’t see out of my right eye. I called and got in with my Eye Dr. he said my optic nerve was swollen and I had to go to Vanderbilt now. I just thought I’d get some eye drops and be fine. But I wasn’t. When I got to the ER we waited over 6 hours to be seen.

NMO diagnosis

I was blessed. A great Neuro team was working. They did an LP on Sunday and it came back positive for NMO with AQP4. Treatment started right away. Steroids, plasma exchange, it all help to get me 95% of my eyesight back. I am blessed. It’s May 14 and I haven’t had a break from steroids yet, my face is like the moon. I worry about the weight I’ve put on since I started steroids. But the worst thing, at present, is just the feeling of pure, bone-tired, exhaustion. Will that ever go away? I still cannot work because of it. It’s crippling.

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