Wednesday, July 1, 2015

NMO: My Diagnosis.. My Start

The beautiful, talented, + creative Scarlett Lillian kindly took the photographs '10

It was March 2006 when my family packed up for our Spring Break vacation to Gatlinburg, TN. I remember blogging in my LiveJournal (because LiveJournal was the hip blogging platform of my youth). A few days into our vacation I fell terribly ill. I had a very high fever that continued rising, shakes, nausea, vomiting, and I was completely out of it. I spent that entire day in bed sleeping into the very next day. When I finally woke up the next morning it was if I hadn't even been sick. It was one of the most bizarre things.

A couple of weeks after we returned back to Jacksonville, FL I started getting numb and tingly toes, then it progressed to my calves, legs and abdomen. I blamed it on poor circulation in my legs/feet and didn't think much of it until it began to give me difficulties. After many years on a swim team and leg/feet injuries I didn't think anything of it, I would tell my mom, but she too thought it was just poor circulation. "I don't feel like I'm walking" I would tell my mom. (I was walking though, just hobbling)

Then, one day while in Spanish class I had the sudden urge to use the restroom really, really bad and then my back began to feel as if it was burning. I went to get up from my desk and my entire left side of my body just fell to the ground. I was unable to move, I lacked any type of feeling and I was scared. The school rushed me to the ER and then discharged claiming that nothing was wrong with me and it was "all in my head."  This became heartbreaking for my mother and I to hear.

 When the weird spectrum of symptoms arose, I'd head to the ER or my PCP. I convinced my PCP (with my mother's help, of course) that something was not right, I wasn't making it up and they needed to find out ASAP! (You wouldn't believe how hard it is to convince a doctor to "keep searching" when they think that nothing is medically wrong with you)...

So he ordered an MRI and I'll never forget the call my mother got, "Mrs. C... We need to get Elizabeth into a hospital IMMEDIATELY! We're setting up orders to have tests done and a room is awaiting her arrival." By that time, it was May 2006 (Two months after our vacation and trying to convince these doctors that something was wrong with me) and I was so relieved that they finally listening to me because I knew something just wasn't right.

I didn't even think about what types of tests they would be conducting; I encountered my first spinal tap (one out of 5 or 6 in the course of 4 years) and I.V. Steroids (AKA- the worst drug ever! Seriously, I gained 80 pounds in three months, my face was the shape of a full moon, and I had the worst case of acne, EVER!) After the test results came back a neurologist diagnosed me with Transverse Myelitis. When I kept having more attacks, he suspected it something different than Transverse Myelitis. I went to a team of specialists who diagnosed me with Multiple Sclerosis because they knew something was wrong, but they didn't know what.. so they figured a name would soothe me and my family.

Fast forward to September 2006 (six months later after my initial attack and complaint) and I am with my two year old cousin, Neve at Memorial Park in Riverside where she's running in the grass. I was looking out towards the river when I collapsed to the ground, unable to move and then quickly noticed that my vision was seeing double. I called my parents and was rushed into the ER where they performed a CT scan, saw something unusual and ordered another MRI. The ER doctors were so amazed at what they say in my optic nerves. Finally, my diagnosis was about to be correct for the last time...
The beautiful, talented, + creative Scarlett Lillian kindly took the photographs '10

I was officially diagnosed with *deep breath* Neuromyelitis Optica on September 23rd, 2006.

Neuromyelitis Optica is a very rare neuro-immunological disease affecting the central nervous system and optic nerves. There are currently no 'specific' medications for the disease and there are absolutely no long-term care paths for the disease.
I took me quite a few years to look at myself in the mirror and see all that I have accomplished and what I'm going to accomplish. Though, I may say "I give up." ... I really don't. I've been fighting this cruel disease for over nine years now, and I'm at the point in my life where even though I am not getting better, and I may never will.. I want to keep hope for my parents, my family, and myself. I trusted in God to lift me through this and overcome my obstacles. It wasn't immediately, but He did.
If you only knew just how many times I wanted to give up and forget life. They were too many to count, but I found light, positivity and inspiration! I want to help you find that too. If you ever need to vent or have someone to listen to, please contact me and I would love to offer my genuine support.

I encourage you to check out my Mission: NMO tab to learn more about NMO + other rare neuro-immunological disorders.


  1. Wow. I can't even begin to imagine all that you've been through. You are seriously an inspiration. I hope and pray that your journey doesn't have any more challenges and if that challenges do arise, I know you will be able to overcome them. From everything I've read on your blog so far, I can tell that you are so brave and courageous.

    Thank you so much for sharing your story.

  2. It has certainly been a challenging and rewarding journey for me. I'm still not used to a lot of things, but I am learning to adapt and overcome anything that is being put my way! I sincerely appreciate the kind words and thoughtful prayers. They are appreciated and I look forward to continuing to share my journey (in the middle of blogging my chapter one) which I hope to have up on the blog in mid- July!

  3. You, my friend, have grown into an amazing young woman. Your bravery inspires me and your strength is astounding. I have no doubt one day I will see you on a billboard or read your name on a book.

  4. This comment has been removed by the author.

  5. You, my friend, have turned into an incredible young woman. Your determination inspires me and your strength astounds me, keep fighting keep pushing through, I'm going to see you on a billboard one day, I have no doubt about that.

  6. This is beautiful, thank you for sharing your story


On Instagram

© elizabeth ashley. Made with love by The Dutch Lady Designs.