Heather's NMO Story

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Heatherhall
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Heather's NMO Story

Post by Heatherhall » Sun Sep 03, 2017 1:01 pm

I woke up and had a fever of 101-102, I couldn't keep anything down. I started taking theraflu meds, then tried day quil and night quil. My fever would go away until meds wore off would come back. I couldn't keep anything down. I went to the dr said I had the flu and get rest that was after 4 days of not keeping anything down. Everyone kept saying you just need to break your fever, I broke it twice then would come back. Day 7 I went back to the dr told them I don't think it's the flu, told them I also had lupus and I keep getting random sharp pain in my legs. Dr offered to get me anti nausea meds, I tried to tell him again I need a fix not a band aid and this wasn't the flu. The nurse drew more labs even though my last set was normal. The blood flow in my finger nails were slow to respond I guess and she told me to go straight to the ER if I didn't get better soon or if I got worst. That night it became really hard to walk, my husband thought because I've been laying in bed sick so much. That didn't make sense to me that night I couldn't go to the bathroom, I could feel that I needed to go, I tried every hour that night could never go. In the morning I went to the ER. The initial dr said think I had infection in my spinal cord and just needed a shot in my back. Then my legs became paralyzed while I was waiting to have test done, then I got double vision, a new dr said they were going to do an MRI. My meds I took at home were wearing off and the pain in my back was getting bad. MRI showed a lot of lesions all down my spine and small lesion on my brain stem. The double vision went away and forget the technical term, think its myelitis- my eyes were shifting back and forth every time I tried to look at something, I couldn't focus. I was told had a transverse myelitis attack, and a really serious one since it was my first attack. My room had to be pitch dark as my eyes were extremely sensitive, I had steroids given to me. I wasn't responding to steroids, so I had to get a port put in and do plasma exchange done. My neurologist did a case study on me while in the hospital as he had only seen eyes move like mine in the textbooks and never had seen a patient with it. I responded great to plasma, slowly was getting my legs back, and eventually my eyes went back to normal. I was told I either have MS or NMO, but my neurologist wanted a second opinion first. I prayed for MS even though both options were bad. It was confirmed I had NMO even though I tested negative. I have been 3 years attack free so far and had another daughter after NMO.

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