My NMO Misdiagnosis Journey, Part Two
Last updated: May 2023
Read the first part of Shekita's NMO misdiagnosis journey here.
ER visits can be traumatizing, especially if you are not getting results or proper care. Even more so, when you are made to feel as if you are "making it all up," it can even further result in medical trauma. I spent entirely too much time back and forth to the ER, and I still didn't have the slightest idea of what was going on. Even with my little education about the medical system, I had to find answers.
The first neurology visit - another NMO misdiagnosis
On the final ER visit, I was referred to neurology. The frustration ran deep, but I was very hopeful when this new referral was provided to me. Luckily, I made an appointment and was able to get in quickly.
When I got to the appointment, I remember waiting a very long time to see the doctor. It was so embarrassing because, at the time, I was still throwing up regularly. Sitting in the waiting room, I had a bag I was throwing up in while in a waiting room full of people.
NMO misdiagnosed as vertigo
When I finally got to see the doctor, he ran a series of tests and diagnosed me with BPPV, a type of vertigo. He was clearly ignoring the obvious neurological signs of possibly something more than vertigo.
I couldn't take it anymore!
I realized after the neurologist's vertigo diagnosis that these doctors wouldn't help me. They would not waste a second of spending their energy to do more than they were required to do.
I was so tired of the back and forth to the ER, back and forth to doctors with no light at the end of the tunnel. I decided I was done with it and would let my body heal on its own.
Trying to heal on my own
It took six months for me to stop throwing up. The nystagmus never went away. It was a year later before I could find some normalcy in my life and the ability to live with the new symptoms I faced. That is until seven years later, this episode repeated.
The second NMO attack
Almost seven years later, I went to work and was extremely nauseous to the point that I had to go home. I started throwing up nonstop. A couple of days later, the hiccups began, and by day 5, I was glued to my bed with extreme vertigo.
Back and forth to the ER, again
This devastated me, but I knew I had to begin my journey back to the ER. As I was back and forth to the ER, new symptoms seemed to manifest after every visit. This time was so much worse than the first.
This attack was so bad that I lost 40 pounds within a month and was advised to see an ear, nose, and throat doctor because I became cross-eyed. Upon one look at me, this doctor sent me back to the ER immediately and ordered an MRI.
The doctors were hurting, not helping
It was so frustrating not being able to understand what was going on and not getting straight answers from the doctors. There was even a point where one of the doctors raised her voice at me out of frustration when I asked questions about what could be happening to me.
Finally, some answers!
After everything I had been through, I didn't think I'd ever get to a point where I'd finally be diagnosed. After they performed the MRI, they found a large lesion on my brain stem. Due to this, I was seen by a neurologist at the hospital and admitted.
The process of being diagnosed with NMO
This neurologist performed a series of tests along with a spinal tap. While I was at the hospital, I was given IV steroids. After four days, I was sent home and followed up with the neurologist after about a week. After meeting with her, I was told I had a rare disease called Neuromyelitis Optica. Although I was devastated by the diagnosis, I was relieved to finally find out, after all these years, an answer to my suffering.
Life after my NMO diagnosis
Unfortunately, I suffer from severe disability. Though I had a long misdiagnosis journey, in the end, I finally received a correct diagnosis of NMO. However, had I been treated adequately from the start, I believe that my quality of life would have been very different.
This is why advocating for yourself is so important. Even more so, we need to work together to ensure that education about NMO is relevant in today's medical knowledge by patients to ensure we can get a quicker diagnosis to avoid permanent disability.
Has NMO impacted your ability to keep a job?