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On Sunday, February 4, 2018, I woke up feeling strange and my left arm was sweating. I assumed that I had been sweating because it was hot throughout the night therefore, I didn’t pay too much attention to it. Later that day, I went to the park with the kids and my husband. I still felt weird but continued to ignore it.
On Monday, I went to work and my supervisor asked me if I was feeling okay. “You don’t look so good.”
I kept convincing myself that I felt fine and needed to push through so I can work. An hour later, my supervisor came to my classroom where I was sweating and my complexion turned white like snow. I had chills and was freezing! She firmly told me that if I didn’t get myself to the hospital immediately that she would call for an ambulance.
I did as I was told and went straight to the hospital where I spent nine hours in the emergency room just so the doctor could tell me that I was fine and likely experiencing a panic attack. I was shocked. I had never experienced a panic attack before. I returned home still not feeling well but I continued to work even though I felt exhausted and dizzy.
On February 11th, despite losing feeling in my legs I continued to work. I was clearly pushing my body to its limits. I went back to the emergency room on February 17th where they kept me for about six hours. This time, the doctor told me a pinched nerve was causing the loss of feeling. I was sent home with a bunch of pills for my nerves and pain management, etc.
I continued to work over the next few weeks. The numbness progressed upwards from my legs to my stomach. I kept telling myself that it was a pinched nerve because that’s what the doctor said! On March 19th, I paid a visit to my primary care doctor and explained to her that I was feeling really hot but when I touched my skin, it felt cold. That same afternoon, I ended up in a wheelchair, unable to walk.
By March 21st, I woke up completely paralyzed from my neck down to my feet. Unfortunately, I even lost control of my bowel and bladder movements. We called 911 and I was transported to a local hospital via ambulance where they did an emergency MRI… I was diagnosed with transverse myelitis (TM).
The ED doctor told me that they could keep me there until the neurologist was around to see me but also that I needed to be seen as soon as possible. If only you could have seen the reaction on my face. We went back into the ambulance where they transported me to another hospital almost an hour and a half away from where we were – a place that I would call home for nearly three months!
The doctors ordered a number of labs and imaging. The neurologist at the new hospital knew there was something else. After two weeks of complete paralysis and a Foley catheter, I started to lose vision in my right eye! I was put on steroids immediately and we agreed that plasmapheresis (PLEX) should also be started right away. I went through seven rounds of PLEX along with IV steroids.
In the meantime, my labs returned from the Mayo Clinic – I tested positive for the aquaporin-4 antibody meaning I tested positive for neuromyelitis optica. In addition to the TM attach I already had, I also had an optic neuritis (ON) attack in the hospital a month later in the hospital followed by another attack. I continued to receive additional rounds of PLEX, steroids, and Rituxan.
To support my recovery, I started both occupational and physical therapies and let me tell you, I worked my butt off and always with a smile 🙂 Even the nurses said that if they had experienced what I had, they wouldn’t have the strength to smile anymore. But you know what? That’s who I am – a warrior!
Fast forward to June 1, 2018. I was discharged as an incomplete paraplegic but with a plan. I was so happy to home and continued to do outpatient OT and PT. I can’t say that it’s all been easy but here I am. By September in the same year, I began walking again with the support of a walker.
Today, in 2020, I can say, I DID IT! Today, I can walk again. It’s not the same as before but hey, at least I can walk! I still deal with spasms and chronic pain (24/7), headaches, etc. but my main priority is my family. I will never give up fighting NMO for the sake of my kids.