I had Autoimmune Encephalitis as a result of the onset of MOGAD (Myelin Oligodendrocyte Glycoprotein Antibody Disease). No trips, viruses or other causes.

My symptoms began in late July of 2021 and I was hospitalized in September of 2021. I was initially misdiagnosed with “unspecified meningitis” because they could not pin down the exact cause, being that MOGAD is very rare.

I was treated for bacterial, viral and fungal meningitis at the hospital. Luckily, part of that treatment was IV steroids, which likely saved my life. I was then sent home with oral steroids, antibiotics and anti-fungal medications.

I laid in bed for months until I went blind.

I got into an Ophthalmologist quickly once I went blind and they diagnosed me with Optic Neuritis.

This led to a 10 day stay in a hospital with IV steroids where I was misdiagnosed with possible MS, NMOSD and Sarcoidosis. I was discharged and referred to a Neurologist who then referred me to another hospital. There, I tested a high positive for MOGAD.

I spent 3 days before Christmas 2021 in the hospital there, in Central Kentucky, two hours away from home. I was given IV steroids once again. On New Years Eve, I went back to the hospital and I was treated again with steroids, then PLEX, and Rituximab.

Afterwards, I was admitted into an inpatient rehabilitation center.

There, I learned to walk, use my hands, add, subtract, feed myself and do everyday tasks again. I also learned how to manage word finding and memory issues. Once I got home, I had in home therapies such as speech language therapy, physical therapy and occupational therapy. All things that helped with issues mentioned earlier.

At home, I remember opening my closet door and I couldn’t remember any of my clothing. It was like I was in someone else’s home.

Four years later, I still have memory issues, word finding issues and trouble with math. I manage by using the “use it or lose it” method. I try and keep my brain in shape with exercise such as yoga, music, art, counting, and I use Subcutaneous Immunoglobulin Therapy (SCIG) to keep my disease in check.

I now work full time as a para educator in my children’s school in the 5/6 grade wing.

If there’s anything I could say to someone dealing with this, whether you are a patient or a caregiver, it’s to just keep the hope.

Things can seem impossible, scary and overwhelming. Never lose hope.

A positive outlook and immersing yourself in things like music, journaling, art and simple math problems are incredibly helpful.

If you would like to speak to someone about encephalitis, please contact our helpline.

Story published December 2025