How it all began… brace yourselves… this is lengthy!

In 2011 or 2012 (I don’t remember exactly), I started to notice when I would bend my neck and look down at something, I would get pins and needles all down my spine. Nothing hurt, nothing was uncomfortable, it was just weird. I brought it up to my parents, and we began seeing doctors. I first saw a Sports Medicine doctor thinking surely it was just a pinched nerve. They did an X-ray, didn’t find anything, and referred me along to a neurologist.

When I saw the neurologist, he told me I would need an MRI and he was concerned I may be experiencing Lhermitte’s sign, and that I could have Multiple Sclerosis. I was terrified. All I knew about MS was that most people ended up disabled and in a wheelchair. I was too young for this! I had my MRI, and the doctor found… NOTHING! While most would think this was a relief, I wanted an answer. He essentially told me he had no diagnosis for me, and hoped it would go away… and it did.

Several years went by… I graduated college… moved to Houston… got engaged… got married… and then my eye started to hurt really bad.

Summer of 2019 I started noticing my left eye hurting any time I would move my eyeball. At first it wasn’t too painful, so I just shrugged it off. I started noticing my vision in my right eye going blurry so I assumed the pain was maybe just tension from over correcting for my other eye. The pain started to become excruciating, so I went to an Optometrist. She agreed it was probably just tension, and gave me steroid drops to help with the pain. They didn’t help. A few more days went by, and the pain was unbearable. I was struggling to work, and my coworker recommended I go see an Ophthalmologist for a second opinion. I made an appointment for the following morning.

The next morning, before work, I went to the Ophthalmologist. He ran several tests and told me he was almost certain I had Optic Neuritis and that I would need steroids to treat it. “Great!” I thought… I finally have a diagnosis and can get some medicine to help! He told me I’d need an MRI to confirm, and that it was an urgent matter. I was advised not to go into work, and instead go to the hospital and get an MRI. As I was checking out, he asked if I had any questions. I asked “so are you going to call in the prescription for the steroids?” He told me “oh no, you would need steroids through an IV and would need to be admitted to the hospital”. I lost it. I bawled walking to my car. I was terrified. I’ve never been this sick before… and didn’t realize until that moment how serious this was.

My husband and I sat in the ER waiting room for 8 hours. I finally received an MRI of my brain and orbits at 3am. I laid in the MRI machine thinking “this is all a waste of money, and I’m fine”. I finished my MRI at around 4am, and the doctor told me they had to admit me at least overnight while I waited on my results. They wheeled me up to the neurology floor, and by the time I got there, the nurse said “your MRI showed Optic Neuritis in both eyes and we will be keeping you for 5 days”. I was exhausted. I had almost been up for 24 hours. At this point, I couldn’t process the news… I just wanted sleep.

At 6am, a resident came in my room and woke me up. I only saw him once… and still question if I dreamt this… but he kneeled by my bed and told me “I want you to be prepared, we will be running several exams over the next few days and it is very likely that you will be diagnosed with Multiple Sclerosis”. Again, I bawled. How was this the second time in my life I was being told this, with two very different symptoms? I was confused. I wanted answers.

Over the next several days I had an MRI of my spine, a spinal tap, and tons of lab work. Everything came back “normal”. I was released from the hospital 5 days later. At a follow up appointment with my neurologist, he told me there was a 25% chance I’d develop MS one day, as it is commonly diagnosed with Optic Neuritis, or soon after. I remember thinking “25%?! That’s nothing! I’ll be fine!”. I thought IF I would ever be diagnosed, it would be at least 10 years or so later. My doctor told me to keep an eye out for any MS signs or symptoms, and to call him if I ever experienced anything “abnormal”. I had a follow up scheduled for the following September of 2020, and I went back to my “normal” life.