Samantha True

Diagnosis: Neuromyelitis Optica Spectrum Disorder

California, United States

Back in 2016, I was having the time of my life. I had just come back from Jamaica in January, I was there for New Years and had a ball. I had just also sold my first home as I had finally decided to take my new career as a realtor seriously. I had a plan for the new year, but  that all changed very fast. I had first started feeling symptoms a few weeks before it all suddenly hit. Weeks before, I was feeling some sort of burning sensation on the inside of my right upper thigh. I had gone to three different doctors and each one said my symptoms sounded like sciatica, and I was prescribed gabapentin which I never took because I just didn’t agree with their diagnosis. So, as time went on I just gave up.

To make a very long story short, I quickly went downhill. I began to be wobbly in my walking as I became more and more ill. All of this took place at home. One day, one of my legs gave out and I fell, and I could not urinate although I felt like I had to. I then decided to call the paramedics. I went to the ER and thankfully there were doctors on staff that paid close attention to the symptoms that I was describing and immediately admitted me. I was given high dose steroids for a course of 5 days. As I sat in the ER, my paralysis began to set in and I could no longer feel my feet, and it started to travel up to my waist. At first, I thought I was tripping. I was saying to myself “are you not able to feel your feet?” and the harsh reality was “NO” you cannot!

The doctors did a spinal tap along with an MRI, and I was diagnosed with NMO/TM. As a result of NMO, the lesions on my spine at C3-C4 affected my ability to walk. It took some time for this to settle in. My spirits were always high while in the hospital and skilled nursing facility and rehabilitation center. I was in these places from February 21st 2016 to April 2016. In the hospital, I was given plasmapheresis, Rituxan and Cytoxan. Nothing happened when I got the plasmapheresis, but it seemed like with every Cytoxan treatment I regained a little bit of movement starting from my feet on up. I never lost bowel control but I did lose bladder control and was given a catheter, but I have since regained that control. I have gone from wheel chair to traditional walker to a rollator. I am now looking to walk on my own eventually.

I feel like I have recovered pretty fast. I have since changed my diet a lot; with the prednisone I was taking I had gained a lot of weight. My previous weight was 182 pounds, after prednisone I went to 206 and now am down to 142. PT and OT have helped me tremendously and it is very beneficial. I was also doing aqua therapy for a while which I plan on going back to. Now as far as the pain, like everyone else, I experience the sensitivity on and off. My medications help me a lot. I have gone from having some serious spasms (let me tell you… those things were no joke). I used to be in so much pain I would literally holler out loud. It seemed as if the medicines were not working!!! I’m so glad I am past that phase. I don’t know what that was all about. In the beginning when this first happened, I didn’t have the pain but I suppose the nerves started to wake up and that was a process. I remember when I first got to the rehabilitation facility, I was sharing a room and because I used to scream so loudly they had to move me to my own room – pretty embarrassing, but what could I do?

At this point in my journey I battle with the pins and needles feeling and stiffness in my lower back. When walking I feel like a robot. I mean it is truly like learning to walk again and I feel like a toddler. The only difference is I don’t want to fall on my behind. But I just try to keep a positive mindset and surround myself with positivity. Oh, did I mention “fair-weather friends?” Yes, well that’s another story!

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Samantha True