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Posted by: The Sumaira Foundation in NMO, Patient, Voices of NMO
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. Unlike most others, I was actually looking forward to turning the big 3-0!
As the month went on, the numbness spread all the way up to my thighs. I contacted my doctor, she was able to see me quickly and was very much on top of it. That’s when I started my journey through all the different testing including the blood work for Lupus, Diabetes, Rheumatoid Arthritis, and iron levels. But as luck would have it, everything returned normal. The next round of testing was an electromyogram (EMG) – easily one of the most unpleasant tests ever and shocking, that too came back normal. I told my doctor that whenever I looked down, I experienced an excruciatingly painful shock down my spinal cord. The doctor immediately sent me in for an MRI.
It’s now August and I was called in to see the neurologist. It felt like a bomb was dropped on me. Apparently, I had relapsing-remitting Multiple Sclerosis. He pointed out that they found lesion on my lower spinal cord and several lesions in my brain. Honestly, I was so confused but 2 of my second cousins have MS so in a strange way, I was mentally ready to handle the diagnosis. My neurologist immediately started me on a 5-day IV treatment and a well-known MS medication.
After 2 months of being on the MS track, I could feel the numbness spread to my neck as well as my fingers. I contacted my neurologist who ordered another MRI and a blood test (NMO IgG). The blood test came back negative but a very long lesion was discovered on my upper spinal cord. My neurologist immediately took me off the MS medication and changed my diagnosis to Neuromyelitis Optica.
Having no idea what NMO was, I naively turned to Dr. Google. Big mistake – I DO NOT advise this! Everything I read terrified me, made me sad, angry, and shocked yet I couldn’t stop researching it. I’ve spent 13 years as a single mother – I know that I’m very strong and independent. While Google did scare me, I was ready to tackle this diagnosis head on continuously telling myself that I will get through this and not let this sickness break me down.
When I got diagnosed with NMO, I had just entered a new relationship. I didn’t tell my partner about anything I was going through or that I was in and out of doctor’s offices getting all kinds of tests performed. I mean, how do you tell a new partner that without scaring them? How do you explain to them that something isn’t right when you don’t know each other that well? I finally bit the bullet and spilled the beans. Gosh, I should have known I could tell this man anything. He continued to open his arms wide to me and support me through thick and thin; we’re celebrating our 4-year anniversary soon! 🙂
I have been on Rituxan (Rituximab) since January 2014 and so happy to say that I’ve been stable ever since! I now lead the Central TX Support Group which brings me great joy. My goal is to reach out to patients, families, and caregivers who are all going through similar experiences and provide helpful information and develop a support system. I’d like to think that I’m one of the lucky ones who didn’t suffer great damage from my attack but I feel even more blessed that I get to take on this role and bring patients together.
With NMO or any autoimmune disease, everyone’s journey is very different. Each person is affected differently and each person has their own way of dealing with it. I look forward to continuing to learn, grow, and meet others in this community. My hope is that we can continue to have breakthroughs in research that get us closer to finding a cure once and for all!
(Published January 3, 2017)