I hope sharing my story can bring awareness to PANS/PANDAS and inspire people to keep going because one day, it will get better.
Hi! My name is Lily, I’m 23 years old and I have PANS. I’ve been hospitalized so many times I can't even count, seen doctors of practically every specialty recognized in the US, and had nearly every type of medical test run on me. I’ve spent 20 years fighting this, with only 5 years since official diagnosis, but today I’m in remission and this is my story.
I wasn’t actually diagnosed until I was 17, but my parents suspect I’ve had PANS since I first had a flare at 13 months. In the 1990s and early 2000s, PANDAS was only beginning to be researched, so my parents dragged me to doctor after doctor with no answers. The most prominent symptom was a head twitch that occurred after any acute bacterial infection, coupled with severe separation anxiety, episodes of rage and significant OCD tendencies. With no seizure activity and the behavioral symptoms chalked up to personality or growing-up, my symptoms faded in and out with each frequent infection.
After having chronic bronchitis for a year and getting the last of my Gardasil vaccines, I started shaking all over my body. It was the perfect storm. I was a senior in high school and the doctors were at a loss. They gave me Valium to put me to sleep each time I started shaking but offered no solution to the endless tics. I missed more than 45 days of school and desperate for answers, my mom started researching online. Once she found PANDAS, everything fell into place. The diagnosis fit me like a glove and we headed out to my family doctor to confirm and start treatment.
If only it was that easy. The primary care physician was convinced PANDAS, which had just started making the news, was a hoax and instead insisted I was faking it and needed to be sent to the hospital for a psychiatric evaluation. He scolded my mom for “trusting Dr. Google” over his expertise and only agreed to an ASO titer blood test after 30 minutes of begging.
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