Madison was diagnosed with Acute Disseminated Encephalomyelitis (ADEM) when she was just 19.

I started having dizziness, headaches and blurry vision but I was dismissed as being fine. I began getting paranoid and hallucinating. I was typing messages that were just scribbled letters (see image at the end).

Within the next couple of days, I was alone in a house, dog sitting.  I fell asleep and slept passed my alarm but eventually woke up and felt even more confused. Nothing that was familiar looked familiar and nothing made sense. I had to meet my mom somewhere, so I got in the driver’s seat forgetting my phone.  The car looked like it made no sense. I remember being confused in the driveway about the gears and about how to drive, but somehow, I did it although I don’t remember much of the drive. On the highway I began vomiting and kept blacking out. I didn’t know what was happening. Everything would slow down, and I’d see black before just being out of it for a few moments then waking up panicking through my grogginess on how to get safe again. I went off the highway into a construction zone having a big construction trunk blaring the horn at me nonstop, but I couldn’t do anything and just sat there. Eventually somehow, I got out and went to a parking lot, vomited again and fell asleep in my car until someone knocked on my window and asked if I was alright, which made me realize I was really late to see my mom. I drove a few places down and went inside (leaving my car door open and car running). I asked them to call my mom trying to guess her phone number. She came and took me to the emergency room (ER).

The doctor I saw in the ER, didn’t look at me properly. I later found out from my mom and neurologist that my pupils were extremely dilated and not responding to light. He told us that my symptoms- confusion, headache, dizziness and blurry vision are probably just from allergies because that was my only medical history. He tested me for drugs and pregnancy since my age and altered mental status, but all was negative, and I was discharged after.

When I went home things got worse. I walked around my house naked because I didn’t remember how to get dressed or where my clothes were. I walked in circles groaning frustrated and vomiting. My parents took me back to the ER, the doctor tried to dismiss me again, but my parents demanded an MRI which unfortunately showed huge lesions all over my brain. I was diagnosed with encephalitis.

I was given steroids and plasma exchange. My right side went paralyzed a few days later and I developed dysarthria after the steroids were stopped, so I needed more IV steroids and plasma exchange.

I was 19 and a college student working part time before this. Now I am 27 and on disability and no longer in school. I lost the ability to drive due to vision issues and attention / executive dysfunction issues. My vision remains blurry, my right side is hypertonic especially my right ankle, it was extremely weak for years and I’ve had to work on gaining strength to help my muscles and joints function better. I cannot regulate my emotions and manage basic things like I used to. My right hand has sensory deficits and a fine motor impairment.

Encephalitis impacted my studies a lot.  I attempted to go back to school at first. I tried to go back for about a year after everything and only take a couple classes at once. I needed a ton of accommodations for visual and cognitive difficulties. I have a slower processing speed, executive dysfunction difficulties, visual issues and extreme mental fatigue that made it too hard to continue with school despite all the accommodations. It was too overwhelming mentally. I ended up getting bilateral optic neuritis relapse and spending weeks in the hospital during the semester which was stressful. When I returned my vision was never good enough to see the board even at the front of the class,, and the constant looking at computer screens hurt my eyes so bad. I haven’t gone back in years now. I was never able to return to work.

I am thankful for regaining the ability to walk, talk, write and think better. But encephalitis is so life altering!

When I got sick, the MOG antibody was just being discovered, and it wasn’t known about at the smaller hospital I was. They just diagnosed me with encephalitis and then ADEM. So, I was never tested in the beginning. My antibody MOG test is negative now, but I have seen many of the best MOG neurologists in the US and they agree this is MOGAD and they are confident that the medication I’m on can make the test negative.

Texts from Madison – ‘I was typing messages that were just scribbled letters.’

Story published October 2025

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