My RARE story

My whole story started when I was in high school. I was a junior in high school and started to have some pretty severe eye problems.  I would go through phases where my vision would dramatically decrease and I would have some extreme pain when I moved my eye. My mom started by taking me to our local eye doctor who quickly referred us to a a neuro-ophthalmologist. The neuro-ophthalmologist was able to run some different tests and look deeper into my eye to try to figure out the true root of the problem. When all the tests he ran came back, he diagnosed me with optic neuritis. This diagnosis came with more tests, and when those came back relatively normal he said my current eye difficulties were a "fluke". There was no real explanation for it. He felt that stress could have been a factor in it as well. My high school boyfriend had broken up with me and there was some typical family stuff going on but nothing that was overtly stressful, nothing that I would say would cause something like this. So, this MD chose not to treat my current bout of optic neuritis. 

This whole scenario went on to happen two more times in the next couple of years. Each time we were told it was "just a fluke". At one point a doctor was concerned that I may have multiple sclerosis and so he ran some tests to test that theory, and came back with no answers yet again I again felt defeated. 

It was around this time that I met my current husband. Believe it or not, we were not fans of each other in high school. We went to the same school, he was a year older than me but he had his opinions about me and I had my opinions about him. Of course, both our opinions were of each other without even knowing each other.... but we will put that little tid bit to the side. My family had started going to a new church, and he just so happened to be there. My (now) husband is a very social butterfly, and was even then. My mom says to this day she remembers seeing him make a v-line towards me to talk to me. At this point, he had long curly hair and was playing in a band. We continued to run into each other week after week. And then... he was gone for a while. When he came back this time, all his curls were gone! Turns out he had been in boot camp and AIT.

He had joined the Army Reserves and was home for a bit. We stayed distant friends and nothing more at this point. A few weeks later, the church all asked to pray for him because he would be deploying within the next few days to Iraq. I remember feeling like my heart had dropped. I never really got to know him that much, but knowing that he was leaving to go overseas was hard enough for me, I cant imagine what it was like for him standing up there. He left, and we heard updates through the church and continued praying for him, until one day.... we got the update no one wants to hear. He had been shot. He was OK, thank goodness, but had been shot. At this point I felt something telling me to write to him. Just write to him and let him know that your thinking and praying for him. This wasn't normally something I would do. But I had this nagging feeling that wouldn't leave me alone that said to write him. So, I did. I jumped out of my box and emailed him just to let him know that I was thinking and praying for him. It turns out, that I was the ONLY one who had written to check on him. He wrote me back and the rest is history! We stayed in very close contact all through his deployment. When he came home on RNR we made it "official", and the rest is history! 

While I was going through my medical problems that I was speaking of above I was able to vent to him and tell him what was going on. I remember him telling me one night that he had been praying that God would take it away from me and give it to him. I thought that was the most selfless thing anybody could have done for me. I knew he was it for me, way before he came home from overseas. 

Not long after my husband returned from Iraq, he was diagnosed with MS (multiple sclerosis). The reason this is so incredible, is because this is the very same disease that he prayed to God to give to him and take away from me. Because of this, he was disabled from the army.

My medical struggles continued on much the same as they had been. My eye pain and vision would flare up and get bad and after a while it would get some better, always taking some of my vision with it on the way. One day not very long after my husband and I had gotten married I passed out in the elevator on the way to work. This wasn't something incredibly odd for me. I had passed out before. But since it happened on hospital grounds, they had to take me to the ER. So, they took me to the ER where they thought I was having seizures, not just syncope spells. The referred me to an outpatient neurologist and let me go home. 

Upon walking into the neurologist appointment, we weren't really sure what to think. As soon as she walked in the door she had a kind personality and put my nerves at ease. After going through my entire history with her, including the several bouts of unexplained optic neuritis I had had, she decided to run some tests. I remember her exact words being "were gonna run this one lab test, it NEVER comes back positive, its an extremely rare disease. I don't want you to even go home and look it up on google because it will just scare you." I said OK, and we went on to get the test done. When we came back a few weeks later to get the results from the test, I remember telling my mom in the car in the parking lot of the doctors office, "I don't even know why we are here, shes just going to tell us everything is normal just like every other doctor has." But we went anyway.... We got into her office, and a medical student came in first and did an entire exam on me before we even saw the MD. That threw some red flags in my mind. That was not common practice for somebody else to be there as well. A few minutes later the MD walked in and she sat us down and she was quiet for a moment. Then I will always remember her words, she said "You know that test that I told you we would run, but not to worry about because it never comes back positive. Well..... yours did."  I remember sitting there in shock. Like what? We have an answer? There is a reason for all of this??? She went on to explain that I had a positive aquaporin4 IgG antibody, which means that I had a positive NMO titer. She said that sometimes people like to run more than one of these to see what the results were, but given that I had a history of the optic neuritis and my antibody numbers were extremely high we were going to consider it an official diagnosis. I left the office in shock for a few reasons. I guess the first one being, that after so many years of unexplained symptoms... we FINALLY had an answer. Nobody could tell me I was just anxious, or making up symptoms because there was an answer for them. 

We went on to see a physician who has seen a few more patients with this disease about 2 hours away. She confirmed the diagnosis and recommended getting me started on a monoclonal antibody that they use as a chemotherapeutic called Rituxan. She said being as how young I am, that she felt this was the best option. So we got that set up and off we went. 

I started my chemo which wasn't the funnest in the world but it wasn't terrible, and went on with everyday life. I finished college with a bachelors in nursing, and currently work at a local hospital. Since being diagnosed then I have had 4 major flare ups which required hospitalization with plasmapharesis and a few minor flare ups that were able to be treated at home. 

This disease is SO rare. It is considered an "orphan" disease because of is rarity. Also because of its rarity there is not much research going on out there for it. Getting the word out about NMO and making sure physicians are aware of what it is and how it attacks and how its treated is essential in helping to find a cure for this disease. A cure is something that I, and so many of my fellow NMOers are striving for. There are many many many people who are much worse off than I am. I am very grateful for the autonomy that I am still able to have as some people do not have that luxury. If you or someone you know feels led to help with fundraising money for research of this orphan disease, 

please contact me!