Moments Leading Up to My NMO Diagnosis
Last updated: March 2023
Anxiety, fear, desperation, confusion, and craziness were the heaviest feelings present in me in early 2016 before my NMO diagnosis. I was having so many symptoms. I couldn’t figure out if it was postpartum or if I was simply going crazy.
Symptoms before the NMO diagnosis
I had just given birth in April 2015 and was experiencing a ton of weird symptoms after birth. I even went as far as to think a voodoo spell had been done on me (I watch too many scary movies!) I was urinating myself without knowing and at no particular time of the day. I was limp walking and losing balance.
The stress was REAL!
I wasn’t very savvy at managing my stress in my 20s. Heck, I struggle with it today. But I particularly remember in early 2016 had so much going on, which is equivalent to a whole lot of stress.
A little retail therapy, anyone?
I was in the process of buying my first home and finishing my university degree. I had a stressful job, two children under 5, and there was so much more going on. One day I decided to do some de-stress shopping. I loved going from work to shopping whenever I felt severe fatigue come on while driving on my long commute from work. How convenient.
The shopping experience gone wrong
One day as I was shopping, I felt like the more walking I did in the store, the more tired my legs became and the harder I was gripping the shopping cart. I would sit in the shoe isle banks of the store just rest, take a breather and gain some energy to continue shopping. But in this shopping experience, I was overwhelmed in general, and as I checked out, something strange happened.
Experiencing paralysis for the first time
As I walked away from the cash register and toward the exit door, my body froze. I fell forward like a cut-down tree. My purse flew to my right side on the floor, and my shopping cart went rolling out through automated doors. It was a mess.
This all happened at the front doors of the store, where everyone was entering and exiting the store. People rushed to my aide, offering for me to sit on a regular chair, ice water, and even call an ambulance. I was so embarrassed.
I knew I was tired and overwhelmed, and my body was demonstrating it.
Trying to ground myself after a terrifying experience
I thanked them all and just took a minute to recharge so I could make it out to my car. A store clerk assisted me to the car and put my bags in my car for me. In the car, I immediately called my husband in tears, telling him what had just happened to me. He talked on the phone with me while I was driving all the way home.
Like a detective on the case
In early February, I became more serious about finding out what was wrong with me. I was reading a lot of literature about postpartum, thinking it might be related, but I soon came to the realization that it was nowhere near that.
So many specialists...
Soon I consulted my primary care physician and explained all the weird things that were happening to me. We treated every part of my body with a different specialist. My bladder incontinence was treated by a urologist. I was seeing a podiatrist for my walking and treating my migraines with my PCP. Nothing was working, and my symptoms felt like they were getting worse.
In March, I was sent to a neurologist, and honestly, I had no clue what type of doctor that was. That gives you an idea of how little I knew about the medical world at the time.
I called my PCP's office, flipping out, accusing her of calling me crazy! She calmed me down and assured me this would be the best place for answers to my symptoms. Heck, I was already there - so I went through with the appointment.
At the time, I thought it was the stupidest appointment ever! The doctor had me pointing my fingers all kinds of ways, tested my strength, and ran a bunch of other silly tests. At the end of the appointment, he said, “ I think I know what you have, but we'll need an MRI first to confirm."
The final diagnosis: NMO
In late April, I followed up with my very first MRI, and it was the most terrifying experience to date. A week later, I purchased my first home in early May of 2016. I also received a call that would change my life forever.
At 7 pm, I got a call from the neurologist. He said it was pretty serious and that we had to act quickly in treating this. I was diagnosed with NMO, Neuromyelitis Optica, and he told me to read what I could on Google so I would be better prepared for our next appointment. Google said I would die in 5 years.
My battle started from then, and the rest is history.
Has NMO impacted your ability to keep a job?