My story about Anti-NMDA Receptor Encephalitis, an acquired brain injury.
Hello, my name is Ryann I grew up on a dairy farm outside the small town of Battle Creek, Nebraska. I am a veterinary technician and everything in my life was all going to plan until April of 2021 when I was 25.
I was struggling severely with psychosis. And two ER trips later to our local hospital I found myself on the behavioral health unit floor going mad. My type of Autoimmune Encephalitis is rare only being discovered in 2007, so being misdiagnosed with bipolar and schizophrenia happens. In my story, I was misdiagnosed and held from my family for a month. I was progressively getting worse and started to have seizures, the psychiatrist treating me was planning to send me to a long-term mental health facility, a detail that family and I discovered only in medical notes. I was scared, I told staff and doctors on many occasions that I wanted to see my family and that I do not belong here. I was getting more physical, I was in pure fight or flight mode, and I truly believed I was going to die in there.
That was until my mother finally had the chance to intervene. I really do consider myself lucky, she along with my father saved my life. My mother, who has been a nurse for 38 years, knew there was something happening to me behind closed doors. She had the chance to see me when they needed her to sign off to perform a procedure on me to help “rule out anything organic” that was causing my condition at the time (no permission was ever granted).
The moment both of my parents saw me, they knew something was very very wrong. I was covered in bruises, unable to walk, talk, respond, I lost 45lbs. They did not leave my side till I was transferred, and the next day I was. Before I even arrived at University of Nebraska Medical Center, a team of neurologists knew what I had, they had an unofficial diagnosis before I even arrived.
To diagnose AE, patients must undergo a lumbar puncture and the spinal fluid collected is sent off to Mayo Clinic in Rochester to be checked for specific anti-body titers. That took around 4-5 days to get my results back and when they came back, I started the intense treatment regimen that was published a few years prior by Mayo Clinic as a guide to treating Anti-NMDAr AE. From my perspective, I remember a large part of my stay at our local hospital, and there were hallucinations that happened between being in and out of consciousness. Looking back now and talking with my loved ones I have been able to make a timeline to match what I was seeing and feeling to what was really going on.
The first week when I got to UNMC I was kept under sedation so I could sleep, it was believed I had gone days without any sleep. I was weaned off the laundry list of anti-psychotics I was on, which is a proven fact to make any form of AE worse. And when I was awake and conscious I was combative. I was kept in wrist restraints for most of my stay as I was pulling everything off me and trying to get out of bed. I was just so confused, I did not understand why I could not have my hands to use, I would fight them constantly. I was non-verbal and not responding to what was happening in my surroundings.
I remember though, talking to myself in my head. I saw the whiteboard across my bed, and I knew I was still in a hospital but didn’t know where. I recognized my mom’s handwriting first, her phone number, my dad’s phone number, a list of foods I like. I would squint to see other things because I did not have my glasses on sometimes. I looked at the wall opposite my bed the tv playing The Office (one of my favorite shows), the shelf above had photos of my family, pets and fiancé. My little white lucky cat.
I remember thinking, wait, how did all these things get here? Who brought my things from home here? I look down at my arms wrapped in gauze to cover all the IV lines, my wrists still wrapped with the blue padded restraints. My childhood rainbow heart blanket was laid across me, what is happening? Come to later find out my sister was responsible for bringing all the things from my home. Within 2 ½ weeks of intense IV steroids, several plasma exchanges, IVIG and Rituximab. I was slowly starting to come around again. Recognizing my family, and fiancé. Trying to communicate through hand squeezes. Frustratingly using my hands and fingers to listen to Taylor Swift on my phone. I was unable to eat as I had no swallow reflex. I had several nasogastric feeding tubes as I kept finding a way to pull them out. I did for a short time (< 24 hours) have a gastric feeding tube, but I pulled that
out too.
Due to being in bed for so long and being severely dehydrated I suffered 3 blood clots, 1 in each of my lungs and 1 behind my knee. I spent 3 weeks in the neuro-icu and was moved to the neuro step down unit for the rest of my stay. By this time, it was mid-June. I was now slowly getting out of bed with the help of physical therapists, I was starting to talk but in short bursts and mostly only repeating what I was hearing. I was visited all day by my family. At this point I knew I had become very sick and was in the hospital for a long time, but I did not understand what happened to me or what caused it all.
At the end of June, I was doing much better but not 100%. I had several assessments, scans and screenings to determine what damage my brain took while inflamed. I was transferred to Madonna Rehabilitation in Omaha on June 28th , and to everyone’s surprise I was testing cognitively better than expected.
I would stay for only 3 weeks at Madonna’s working my tail off. Every day was scheduled full of physical therapy, occupational therapy, speech, and mental assessments. July 8th, I went home back to my parents’ house on the farm. It was determined the best thing for me at the time was to stay where everything was on the same floor and so someone could be with me most of the day. Part of the treatment plan that I had to carry out when I got home was daily IVIG and monthly Rituximab treatments. I still had several doctors’ appointments, tests, and I also started therapy for PTSD. I stayed with my parents until October, and then moved back in with my fiancé and pets. It is said it takes an estimated 3-4 years to recover from anti-NMDAr AE, but nothing is set in stone due to it being relatively new.
No one really knows how to help a loved one that goes through such a bizarre and crazy medical experience. I felt I went into auto pilot for the next several months, doing what I was told by everyone like I was a child again. I understood that it all was for my wellbeing, but as I started to look/sound okay again and life started to move forward, my head space was still not okay. I have been seeing the same phycologist that was assigned to my case after I left Madonna. I am now seeing a special therapist in Omaha to help me process trauma and do EMDR therapy with me.
I lost the jobs I was doing, working in a vet clinic and part-time teaching vet tech classes at the community college. Everything before I got sick was going my way, I was so excited to be where I was in my life. Happily, engaged, homeowner, and using my degree/license I worked so hard for. Everything was planned down to the day for my now husband and I to get married in October of 2021, but had to postpone. I did not start working again until February of 2022. Under some serious convincing from my mom, I got a part time job at our local Dollar General and I stayed there up until May of 2024.
After serious therapy and working on myself mentally I am happy to report I have recently taken a remote job working in the vet field again.
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