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I was taking care of my father who had MS for many years and experienced sporadic health issues but never at the same time. I began to notice that these issues were becoming increasingly worse, with more signs and symptoms of multiple sclerosis. I had concerns but approached it differently. I didn’t want this to define me so I ignored many of the symptoms until my body didn’t leave me with a choice. I had swollen lacrimal glands and experienced extreme pain in both eyes but pushed through it taking ibuprofen; I was determined to just keep going.
I worked a full-time job at an eye clinic, three children to raise, and was taking care of my disabled father. I was his sole caregiver. I will never forget the day when my body said “NO MORE”. I was working as the scribe for the retina specialist who I was assigned to full time. I was sitting at my computer typing what the doctor was saying and all of a sudden, I was unable to see him out of the side of my left eye. I didn’t panic – he is a very busy doctor so I waited until I was demanded to tell him. At first, we suspected it could be a retinal detachment. It was not detachment.
This moment would mark the beginning of a whirlwind life for the next few years. I had testing after testing. My MRI scans always read normal. I finally got to a neuro-ophthalmologist and she tested me for different autoimmune diseases. When all tests came back normal, she stated she knew something was not right. My optic nerve was inflamed I had an APD (afferent pupilary defect) which are signs of central nervous system diseases.
I finally spoke up and asked if MS was ruled out. When I described all of my symptoms and shared that my father has MS, she referred me to my neurologist who is the head of the MS Center of Northeastern NY. I was so scared at my first appointment. I was terrified of getting the same disease that I grew up around my whole life. I watched my father get progressively worse. Then, I was diagnosed (at first) with neuromyelitis optica (NMO). Out of relief, I cried because it wasn’t MS and because I wasn’t crazy!
I attempted to research NMO and obtain as much information on the disease as possible but was surprised to learn how little there was out there. Soon, I realized that not matter which disease I actually had, it was scary. However, I was not going to let the diagnosis bring me down. I started Rituxan infusions. After the first infusion, I got sick for an entire month. After the second infusion, we discovered that I was in fact allergic to Rituxan.
As time passed, I became weaker, peripheral vision was getting worse, and my seizures were so frequent. My legs hurt so bad with horrible leg spasms every night and I had to rely on a crutch to help with balance. When my neurologist discovered that I was becoming paralyzed, he immediately ordered a strong course of steroids. The doctor then changed my diagnosis to MS. I was so confused not to mention, embarrassed because I had told all of my family and friends that I had NMO. It took two months of 1,000 mg of steroids ever other week to stop the progression. I began my new infusion, Ocrevus, in December 2018 and it is working so well!
Sumaira asked me to share my Voices of NMO™ story after attending the NMO Awareness Gala in Boston and before my diagnosis change. I was happy to do it and wanted to pave the way for other patients but was scared and let my anxiety get the best of me. Then when it got worse, I was unable to provide video clips AND my diagnosis changed to MS; I felt like I no longer had a right to do it.
I found myself slipping into a dark hole and couldn’t seem to get myself out of it. I had to remind myself that it’s only dark if you don’t shine your brightest. I may not be the only one to have my diagnosis switched. Both MS and NMO are both life-altering diseases that share many similarities. I hope my story is a reminder that as patients, we need to speak our minds, advocate for ourselves, and have our voices be heard.