My NMO story started about 15 years ago. I was a sophomore in high school and was just released for summer break…
The very next day, I started to feel ill. I was throwing up uncontrollably. It started with just a few times a day, and suddenly I was throwing up or dry heaving 12 or more times a daily. I was admitted to the local children’s hospital, treated for dehydration, and sent home. The vomiting continued, but my persistent parents fought the doctors tirelessly for more answers. They performed several tests, MRI, CT scans, etc. The tests came back with no remarkable results; time was not on our side. As days passed, I continued to vomit, unable to keep liquids or food down. I was surviving only off of a feeding tube, literally wasting away. Doctors threw their hands up; they could not come up with a reason for my constant vomiting. It seemed as though they were frustrated with the lack of answers and just gave up on me. The symptoms continued for almost three months.
My parents put up a strong front for me but were preparing for the worst. Family and friends from all over came to say their last goodbyes to me. Running out of options, the doctors made a decision to send me to the Mayo Clinic in Minnesota. Mayo Clinic requested another MRI scan before getting transferred. I had already had one but it was within the first month of my illness. Later that night before my morning departure, the hospital performed another MRI where they found a previously unseen spot on the medulla part of my brain. This seemed to be the cause for all the vomiting. The spot was on the chemoreceptor trigger zone or the “vomiting center”. Doctors couldn’t give a reason as to why the spot was there, but decided to treat it with steroids. Within a few, days the vomiting finally stopped; I had an appetite again and could eat! However, it took a while for me to regain strength, even to walk and go up and down steps. It seemed as though I had survived this whole nightmare but still without any answers.
Fast forward to 2016. I am happily married to a loving husband and have a beautiful daughter and two sweet little boys. Life is great! Until one morning, I woke up and could not see out of my right eye. I immediately saw an optometrist and was diagnosed with optic neuritis. He suggested that I consult a neurologist due to the rarity of my diagnosis. With steroid injections, I was able to retrieve most of my eyesight. However, I was determined to find out why these odd things kept happening to me. There were several less severe signs or symptoms throughout my life that I simply overlooked. With unlimited determination and seeking the right doctors, I was finally diagnosed with neuromyelitis optica. The new MRI scan showed several spots of demyelination of varying sizes. The really emotional part is knowing that these spots were years in the making. Perhaps everything I went through could have been avoided with further investigation 15 years ago however, I can’t look back and I feel really lucky to be where I am.
It was a long process but I finally have a diagnosis. I am now being treated with CellCept (an immunosuppressant) that in theory will stop the demyelination and prevent future relapses or attacks. My life has completely changed. It’s hard not to be fearful of what the future might bring with this nasty disease but I try to stay optimistic.
Every day is a fight, but one I will conquer every day for the sake of my family. This journey has shaped me as a person. I am so grateful for all the support I have, my loving parents, patient husband, and the reason I keep fighting, my kids. ♥
Published on February 13, 2019