NMO Warrior

Prudence Perkins

On December 15, 2018, I went for my yearly Mammogram. The next day, I felt a tightening below my ribs, like someone was giving me an extremely tight hug. All I could think about was calling in a complaint to the hospital because something may have gone wrong during the mammogram. It was hard to breath, sit or lie down to sleep and I remember thinking I was probably working too hard and all I needed was some time off to recharge. I then began to feel a tingling feeling on my left foot, the next day the tingling feeling rose to my knee. When the tingling moved over to my right leg, I began to panic and knew something was seriously wrong. I was experiencing weakness and numbness in both legs and was having difficulty walking, I could not get in and out of my car or bed without lifting my legs with my hands. During this time, I had filed for a divorce and because of the hostility, I had to wait an extra day to drop the kids with their dad for the weekend, then head over to the emergency room. I was dragging my feet, couldn’t balance or walk straight and had lost functioning of my bowel and bladder, I was terrified. I knew I was in serious trouble and the problem was neurological and getting worse. I was doing Self-Catheterization to empty my bladder and started taking a stool softener. All this happened in a period of 5 days before I was finally able to go to the emergency room on 12/21/18. I was given Steroids the next day, while they figured out what was going on. After going through several tests and procedures on 12/25/18, I was diagnosed with NMOSD. I was discharged a few weeks later and started the new year going through recovery.

I relapsed in March 2019 and was immediately treated upon my arrival to the ER, I was discharged after receiving treatment for 5 days.

I relapsed again in July 2019. I had accquired a new Neurologist and struggled deciding where to go. To JPS Hospital where upon pulling my information, would immediately be rushed for treatment or going to UTSW where my Neurologist was located. I decided to go to UTSW and even though I told them that my condition was deteriorating and who my Doctor was, as I had been told to do when arriving in the ER, the triage was not as good as what I had experienced at JPS. I was able to barely walk into the ER, but by the time I was seen by someone, I had lost feeling in both my legs and could not walk. I felt so defeated. After being interviewed several times by different people, I was then transferred to the Neurological Center. I was placed on Steroid treatment, then plasmapheresis. After a few weeks, I was moved upstairs for Rehabilitation. Learning how to walk when you cannot feel the floor beneath you is the toughest thing I’ve ever had to go through. I was discharged after a month in a wheelchair and continued going for rehab. I was afraid of losing my kids during the divorce because I could not take care of myself and the kids. I was also struggling financially, mentally and emotionally. I pushed myself harder than I was supposed to, I had everything to lose. Within a few months, I went from wheelchair, to walker to cane to wobbling around trying to find something to hold on to.

I currently take just one medication for my symptoms and go for Soliris infusions every 2 weeks indefinitely. At times I forget that I have NMO, until of course when I forget to take my medication and the pain, spasms and difficulty walking comes rushing back to remind me. The tightening below my ribs is always there, but not as painful, although every so often I get spasms that hurt. My feet are always cold and the only time I don’t wear socks is when I take a shower. I have been relapse-free for almost 2 years.

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