How I was Diagnosed
Last updated: March 2023
I began to have really weird symptoms a couple years back. At first, I had a rash that was generalized that eventually ended up with most of the skin on my trunk, hands and legs peeling off. My regular MD had noted that it was an allergy but it was difficult to pin down. By the time I had seen her, it was mostly gone, but I had taken pictures to show her. Then I began to notice that my feet were cold all the time (it was August). I checked the temperature of my feet and they were warm and they were not bluish, so I knew it was not circulatory in nature (I am a nurse) so I had decided that it must be nerve or orthopedic elated. I had made an appointment with my orthopedic doctor, which was 3 weeks away.
A fall landed me in the ER
I fell in the bathroom at home and was unable to get up. I was taken to an ER, and when I described that I had been having trouble walking, was sent for an MRI of the spine. I was told that I had a demyelinating disorder of some sort, and immediately thought of MS. I was admitted, placed on a ton of steroids, and transferred to the main campus of the hospital for further evaluation. I had spinal taps, lab work and continued with lots of IV steroids.
Finding out I have NMO
It was not until several weeks later that I found out I had NMO. I knew nothing about it, but set out to find out more. Through this website and many others I did find out a lot of information. I was placed on monthly injects of a drug called Enspryng. I have to say that I was somewhat afraid of having the intense pain and spasms that I have been reading about on this website, but so far, I have not had any of these issues. I still have the numbness, and I do need to walk with a cane at times, I am doing all right. I do have significant fatigue, and need rest periods but have managed, with help of family and friends, to continue to be able to live independently and take of my own and my husband's needs on a daily basis. I have a lot of faith in my specialist who has been a real partner in my care.
Typically, how much time passes between attacks for you?