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NMO Story: Always Fighting

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, she 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 called NMO-Immunoglobulin G (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.

I had spent about 13 years as a single mother, I am very strong and independent! I was ready to tackle this diagnosis head on, telling myself over and over again that I will get through this, I will continue to live my life and it will not break me down. One of the hardest things about being told that I have NMOSD, was that I was in a fairly new relationship. I didn’t tell my partner about anything I was going through or that I was in and out of the doctors’ offices doing all kinds different tests. How do you tell someone that? How do you explain to them that something isn’t right? I knew I had to bite the bullet and just sit down with him and spill the beans; I should have known I could tell this man anything!! He continued to open his arms wide to me, be there for me and support me through this journey. Now, we will celebrate our four-year anniversary fairly soon! I have been on Rituxan (Rituximab) since January 2014 and have been stable ever since!

I am now the Support Group Leader for the Central Texas support group. Living with NMOSD, transverse myelitis or any other rare auto-immune disorder is never easy to do by yourself, so my goal is to reach out to patients, families and caregivers that are all going through the same thing and to provide helpful information, knowledgeable speakers, and an overall support system for everyone involved. I like to think that I am one of the lucky ones that didn’t suffer great damage from my attack, but I also like to think that this has blessed me with the opportunity to take on this role and bring us all together. I look forward to continuing to learn, grow and meet others in this community! My hope, now having this rare auto-immune disorder, is that we can continue to have breakthroughs that get us one step closer to finding a cure!

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