Life after autoimmune encephalitis: Alex shares his story

July 24, 2017

Hanging out with friends and being a normal 19-year old seemed to be the right thing to do during the summer of 2010. Having a great time and then it all went black . . .

I woke up in the hospital in Delta, Colorado. It was very faint. I remember my grandparents were there and it was like a blurry movie. The doctors said I had a seizure and I would be fine. They sent me back home with my grandparents.

During the summers I would go out to my grandparents place and stay with them. I helped my grandpa and his company. I returned back to my grandparents and the next night I was found on the ground in the bathroom. They had me taken in an ambulance to the hospital again. The doctors said I had another seizure.

This is where I don’t remember anything.

I was taken to a larger nearby hospital because the doctors didn’t know what was wrong. They thought a bigger hospital could find out what was going on. I arrived and they ran tests and found nothing wrong with me. Except everything was wrong. I was non-respondent, angry, confused, talking out of my mind about things. The doctors at this hospital had no clue what was wrong with me. I was there for 2 weeks. 2 weeks that I don’t remember anything, absolutely nothing. They released me from the hospital and my dad came and took me to Denver.

We arrived at Saint Joseph’s hospital and they started working on me. Over the next 2 and half months I had been on all 15 floors of the hospital. I had about 15 different doctors trying to solve what was wrong. I had 2 security officers outside my door. I became known throughout the hospital.

I know what you’re thinking… why did I have security outside my door?I would try to escape and run. I was so violent and mad and I would try to run away from the doctors. I actually made it all the way down to the parking lot one time. I punched a nurse and two security guards. I was angry and mean. I was out of control. I had to be restrained and watched 24/7. I was not the Alex my family knew. I would say extremely mean things to everyone and try to hurt them. Some of the doctors said it seemed like I was possessed.

The doctors had come to a conclusion within the first month of me being there that I had psychological problems and they wanted to send me to a mental health institute. My parents fought against that and said no. they told the doctors how I am and who I am. This disease was causing these problems.

I’ve never had any health problems or any mental issues in my life. I have always been in great shape and health. So those saying I had physiological problems were wrong.

I am not a very religious person but for some reason god or something or someone sent the doctor to my rescue. Dr. Barbie was her name. It’s like she came out of nowhere. She had recently studied an illness that was similar to what was going on with me. She ran several tests and scans on me over the next few weeks. I had 9 spinal taps done. I guess I am glad I don’t remember that part.

Dr. Barbie came to the conclusion that I had swelling in my brain and that I had the Anti-NMDA receptor encephalitis. It’s an autoimmune disease that attacks your own body. Over the next week Dr. Barbie and her team were trying to find something to help me get out of this coma symptoms I was having.

This all happened in a 4-month time period. The first few weeks I don’t remember anything. The next two months I remember it being blurry and laying in a hospital bed. The 3rd month I don’t remember a thing. What helped me and got me out of the non-coherent stage was a medicine called rituxan. It’s an infusion that was done and it woke my body up. I woke up… I was lying in the hospital with my family around me and doctors all around me. I was confused on what was going on. I remember bits and pieces like a puzzle. It’s like I was awake but had no control. I can see but couldn’t speak. I was lost and confused.

The last thing I remember was being at a get-together with some friends. Everything after that was like a blur and a very fast dream. It was hard for me to talk and walk. The doctors explained to me what had happen and were going to send me to a rehabilitation center. The doctors released me and sent me to a rehabilitation center and I was there for a month. I was doing walking and talking exercises to retrain my body.

What’s crazy is over the time I was in the hospital, which I don’t remember I was able to speak and talk and walk. But when I came out of the unconscious stage I couldn’t do either one of those very well. I gained everything back-it took a total of 6 months. I still have problems today with speech, I stutter and my hands shake a lot. I go every 6 months and get an infusion of the rituxan medicine. It seems to help. It’s not a fun process; I sit in a chair for 8 hours and get this medicine pumped into me.

I am thankful for everyone supporting me through this nightmare in my life. I could only imagine how my family felt. It’s been 6 years since I had gotten sick with AE. I’ve gotten engaged and I have a baby on the way. I have come to realize that there is still life after AE. You can still live your life even after this terrible incident. I hope this helps someone to keep fighting against this terrible disease and to look to the future and see there is one for you. Keep fighting and keep pursing your life. Because what’s ahead is still the best yet to come.

AEA is so appreciative to Alex for sharing his story in hopes of inspiring others with autoimmune encephalitis. Here’s to continued great health for him!