MY AUTOIMMUNE ENCEPHALITIS STORY
Most of what I recall and write was told to me after I was able to understand better; however, there are still gaps and I don’t retain things like I used to be able to do.
WHAT THE HELL HAPPENED
In Fall 2016, I started feeling like I had a bad case of the flu even though I didn’t have typical symptoms like coughing, sore throat, stuffy nose, and fever, but I did severe body aches, headaches, and fatigue then things started to get strange.
You have probably heard of brain fog. Well, it was a dense fog. I started having issues remembering things like what I just did or did the day before as well as how to do things. I was texting gibberish but I didn’t see it. I also started speaking gibberish because I developed aphasia.
Then I started using furniture to walk which declined into crawling and then into having to be carried by friends. Also, I had developed nystagmus, which is when the eyes bounce up and down or side to side, and my childhood corrected diplopia, aka double vision, returned as well. Also, my balance was gone. I needed assistance walking any distance and getting up or sitting up or turning my head too quickly would cause me to have a feeling of falling. I wasn’t dizzy but I didn’t have any balance. On top of this, I had really bad psoriasis on my hands. They looked like cauliflower when I was admitted to the Hospital at the University of Pennsylvania.
**LEARN MORE BY READING WHAT IS AUTOIMMUNE ENCEPHALITIS
MISDIAGNOSED SALVATION
I was misdiagnosed by two doctors at two different hospitals. One said I had vertigo and sent me home with pills and the other said I had dementia and was trying to place me in a nursing home to “live out what was left of my life.” I can remember feeling such rage at what he said but I wasn’t able to yell or do anything. However, I was lucky that I wasn’t treated as they had suggested.
Luckily, at the time, I had a friend named Michelle acting as a caregiver. She forced them to sign me out and somehow got me to the very awesome The Hospital of the University of Pennsylvania. I say somehow because she is only 5 feet and I wasn’t a light man. At the Emergency Room entrance, a very nice nurse that was just starting shift helped get me inside while she parked the car. In the waiting area, they quickly put a mask on me fearing I had something contagious. I don’t recall much that happened while waiting but 24 hours later, I was seen and then quickly admitted.
THIRD DR IS A CHARM
I sat in the hospital room alone in the bed closest to the door without any lights on except the hallway light. Michelle was there a lot which was comforting but I was also in and out of reality. I had many long conversations with relatives that had passed as well as other people that weren’t there and I would be so excited and happy to have talked with them. When I wasn’t hallucinating, I would say how happy I was to have spoken with my parents, but then the reality would hit me when I was reminded that they had passed over 30+ years ago.
In between hallucinating, I would stare as well as have absence seizures periodically. During those times, I recall what looked like knowing things going on around me but I appear to be looking through a narrow fuzzy tunnel. I started to not be able to tell what was real or what was not so I started doubting myself and would just stay quiet. I felt like I was inside a robot version of me. I would move as instructed and try to answer but I couldn’t move as needed nor find the words to say what I was thinking. It was like screaming into a pillow in the dark.
One day, I was sitting on the side of the bed looking into the hallway trying to figure out where I was and what is going on. I was the only person in a double room. Then, about 40 plus people rushed into my room startling me. It was Dr. Eric Lancaster ( whom I had no idea who he was and how knowledgeable he was at the time ) and about 30+ students entered the room. I know they are all doctors since The Hospital of The University of Pennsylvania is a teaching hospital, but I didn’t realize what was happening.
Dr. Lancaster calmly and quietly introduced himself and kept the other doctors off as he introduced himself and informed me who the others were. He did some tests and had some other doctors do some and he would turn to talk to them about my situation and diagnosis as I just looked around scared even though he was very calming. I would calm down a lot when I saw Michelle all the way in the corner behind a few doctors. They all lined up and took turns looking at my nystagmus and he recorded it for his research. After a certain amount of time ( I didn’t have any concept of time ), Dr. Lancaster said thank you and that he will see me again soon. I didn’t recall but I was told that I was given a Lumbar Puncture in my hospital room bed. A Lumbar Puncture is required to obtain cerebrospinal fluid (CSF) which is used to test for the presence of antibodies that cause Encephalitis. About a day later, I was diagnosed with Autoimmune Encephalitis. However, the antibody that caused my Autoimmune Encephalitis has never been seen before so, how I got sick may never be known.
I spent months in the hospital and I started coming out of the fog as I was given a huge daily dose of prednisone. I think I started IVIG, intravenous immunoglobulin, also. After a while, I started to become more aware but I still had a lot of major issues like seeing, speaking, walking, and thinking. I failed the clock test a few times during my stay but i was eventually able to draw it correctly (kinda) after a few months. So, it was time to start rehabilitation even though I still had nystagmus and diplopia in full as well as extreme balance issues.
ON THE ROAD TO…
I was at the physical rehabilitation center for a few months. At the physical rehab center, I had my own room which was nice but I was on the stroke ward because they had no idea what my illness was but since it was brain related, it seemed logical when I think about now. After some orientation, I was given a shower which I only remember as me sitting on a chair in the walk-in private bathroom in my room and being sprayed by the nurse and told to wash. It sounds worse than it was because when I was somewhat better, I was told that it was not a dream and was real but was very necessary because I seriously needed it.
I had to relearn how to walk, speak, write, shapes, date, do basic tasks like sort things, take clothes from washer to dryer, remember to turn off the stove, feed myself, and hygiene.
They would try all kinds of rehab things which I do not know if was because they were training people or they just didn’t know how to deal with someone with all my conditions. I was a very calm patient mostly because I didn’t know what to do, but I don’t think they were prepared for a patient like me. They weren’t able to really handle me and my condition but I didn’t know that at the time but they were all very nice. However, when my insurance allotted time was getting close to being up, they rushed me through a bunch of tests to “qualify” I was good to go home, but I wasn’t; however, I couldn’t argue nor did I want to stay. So, I went home.
HOMEWARD BOUND
At the beginning of this, I had moved in with Michelle so, she brought me back to her place. For months, she had to do everything, except bathe me, including coordinating all my personal/work/financial task as well as take me to doctor appointments and infusion appointments.
As the treatments progressed, I could function more and part of my home rehabilitation was doing small chores for small amounts of time as well as the exercises I was given in the physical rehabilitation center. I was able to get my infusions at home also.
Eventually, I was able to move out on my own even though I need a lot of reminders and queues and continued my infusions on my own which wasn’t easy but it was the best option I had at the time.
So, I am on my own. Thankful for the help of Michelle and friends. Tasks that were no brainers (pun intended) now take a lot longer and many revisions. I can’t retain things like I used to but I am not as bad as I was a while ago. I lose track of time sometimes and have to be very careful food prepping and cooking. House cleaning is more like exercise. Walking outside takes a few days of prep and a few hours of recuperating.
But I learned to deal day by day with the issues as best I can every day. Making progress and stumbling but always moving forward.
Always moving forward.
WHAT I WANT FOR YOU
To everyone going through anything…I feel for you. Sometimes it will seem unbearable and you may feel like giving up. But, you have to keep pushing through each issue each day. If you take issues in parts instead of all at once, it is so much easier. However, if you feel you are truly at your wits end, please seek professional help. Friends can be helpful, but sometimes their own beliefs may clash with your need for help. So, seek nonobjective professional help.