My story of being diagnosed was a long process like many other NMO patients. It all started in June 2009 waking up and having pins and needles in both my legs. A couple of days passed and it was not getting any better. Within a few days I was working and all of a sudden I could not control my left arm. My husband (Eric) rushed me to the hospital where the ER doctor told me I needed to have an MRI right away. Within a half hour after the MRI they diagnosed me with Transverse Myelitis with one lesion located where my neck and spine met. I was in the hospital for five days with five rounds of steroids. I was paralyzed in my left arm and having horrible spasms. After my five days I returned home and started to research what exactly was Transverse Myelitis? It may result in injury across the spinal cord, causing diminished or absent sensation below the injury. I had to go to a follow up appointment with a Neuro doctor the following week. When I went to Denver to see the Neuro everything was going well. I was slowly starting to use my hand again and I felt pretty good but what next? My neurologist suggested, “there was no reason to start taking any medication for this since I had only one lesion. If I started taking any MS medication then once I started I could not stop.” He also said the TM attack I had would probably be the only attack I should have and I should be ok from here on out. Boy was he wrong!
In July 2009 I just started shaking so bad for no reason it looked like I was having a seizure. Eric phoned my neurologist who decided to put me on some anti-seizure medication. Unfortunately that didn’t work so when my mother came to visit us that day, she took one look at me and said “Erin is going to the hospital in Denver.” We packed up and headed down the mountain to the hospital in Denver. They decided to admit me and to do more tests in the morning but they did start me on steroids to help the inflammation that was going on (or thought was going on). The following morning I went through a bunch of tests and MRI’s, and a few hours later I was resting in my room when Dr. B came in and sat at the end of my bed. He told my mother and I that I have Relapsing Remitting MS and I could go home if I wanted to although he suggested I stay and complete more steroid treatments. The doctors had found more lesions on my spine and needed to start MS medications right away. This attack was so bad this time that I was paralyzed again in my left arm and I could barely walk – I had to use a walker to get around. That day when they gave me my diagnoses I remember being so scared and worried that I had no idea what to do next or what my life was going to be like now? I spent five days in the hospital doing steroids and trying to recover from the attack.
I was in pretty bad shape; I came home and just laid in our bed for days on end. I was really depressed and also very scared. At that time I was on 19 different medications. I never take medication since I have always been a healthy woman.
A couple of weeks passed by while my family worked hard to get me into one of the top doctors in Colorado that treated MS Patients. I brought him all my hospital records but what I remember so clearly was how easily he was able to see the severity of my lesions. He put my MRI CD’s on his computer and within 2 minutes said I in fact have had all these liaisons since June 2009, my first attack. My heart just sank that I had been misinformed and suffering for so long. Even I could see all the lesions on the MRI and I am not a doctor. He assured me everything was going to be ok and I started taking Copaxone very quickly so that I would not have another attack.
Everything was going pretty well until the end of August when I woke up one morning and my vision in my left eye was not right. I had blurry circles and it was the weirdest thing as the day went on and I started getting really bad Vertigo. Once again Eric phoned Dr. C and they wanted me to come down to do another MRI the next day. By the next morning though I could not see out of my left eye at all! A few days passed and I received a call from the nurse saying that they found new lesions and that I had Optic Neuritis. Overwhelmed, I just started to cry. I was confused on how I could have developed new lesions within a month? After a few days, I met with Dr. C again and this time he told me they were going to switch my diagnoses to Neuro Myelitis Optica. But what did I need to do now? Dr. C recommended I visit the Mayo Clinic in Scottsdale and see Dr. D who could provide a second opinion.
By the time I got to the Mayo Clinic I had over twelve MRI’s and three spinal taps that all tested negative for MS and Neuro Myelitis Optica. By this time it was the end of October 2009. One good thing was that the appointment at the Mayo Clinic was such a great experience especially working with Dr. D. He looked over all my medical records and agreed with Dr. C that I have NMO.
When we arrived back in Denver we went back to see Dr C who wanted me start Rituxan. We found out that Rituxan is not covered by insurance so we had to approach the drug manufacture to see if they would donate it to me. About 2 weeks later I received a call from the drug company that I qualified for them to donate Rituxan to me and we started the process.
Currently I am off all medications since Eric and I are trying to have a baby. With my doctors following me very closely, this has been a new challenge. I have been very fortunate in my life I have had the opportunity to see some of the top neurologists that treat NMO here in the U.S. – that has help me get to where I am today. In September 2010 I have been in remission for a year now.