Hello, my name is Heather Reynolds and I was diagnosed with Neuromyelitis Optica Spectrum Disorder (NMOSD) in November 2013. My symptoms started June of that year with my toes going numb, shortly after returning from a cruise I took for my 30th birthday. And to think unlike most others, I was looking forward to the big 3-0! As the month went on the numbness spread all the way up to my thighs. I contacted my doctor, she got me in quickly and was on top of it. That’s when I started my journey with all the different tests including the blood work for lupus, diabetes, RA, and iron levels. Of course, all of that came back negative. The next round of testing was an EMG, one of the most unpleasant tests ever, and, well, that came back normal too. When I mentioned to the doctor that whenever I would look down, I was getting a painful shock down my spinal cord, he sent me in for an MRI, with and without contrast. It was now August. When my results came in, I was called in to see the neurologist. That is when he dropped the bomb on me that I had relapsing-remitting MS. He pointed out the lesion on my lower spinal cord and then a few lesions that developed on my brain. Honestly I was confused but yet at peace with this. Funny enough, I have two second cousins that have MS so I was mentally ready to handle this diagnosis. My neurologist immediately started me on a five-day course of IV steroids and a well-known MS medication.
After two months of being on the MS medication, I felt the numbness spread to my neck as well as my fingers. I contacted my neurologist and he sent me in for another MRI and a blood test (the NMO IgG). The results from the blood test were negative, but that is when he discovered I had a very long lesion on my upper spinal cord. He immediately took me off of the MS medication and changed my diagnosis to NMOSD, this was November. Of course having no idea what NMOSD was, the first thing I did was turn to Dr. Google. Big mistake!! Every piece of information scared me to death, made me sad and angry and made my jaw drop every time I forced myself to read it. I sat down with him and went over the new diagnosis, the prognosis, and what to expect for the future.