When severe food restriction and complex symptoms are mistaken for FND, proper evaluation is crucial.
Hey, I’m Sophie! When I was around 12 years old, I got the flu. I didn’t think much of it. I got multiple infections during that time. A few days later, I started winking, stopped eating, and stopped sleeping, feeling more irritated and in a lower mood. Winking was my first tic. That tic still goes away and comes back, and I’m 20 now.
Over the years, I developed over 20 different motor tics and like five verbal tics. The tics got worse and worse. I also developed Coprolalia and echolalia. I couldn’t be in school sometimes. I wouldn’t go or I’d run away. And one day I just stared off for like a few minutes, which was alarming and kinda scary. I wasn’t moving or responding, which started happening more often when I was around 14. After this, my family decided that I would see a neurologist. The neurologist told me I have focal seizures. I can’t remember what age my first grand mal seizure was. But all I remember is waking up in the hospital, hooked up to oxygen, IV, and heart monitors, all that stuff. I was confused and scared. I thought that was the only time, and it wouldn’t happen again, but it did. That deteriorated my mental health after a while. I didn’t go to school for a while.
I started at a residential mental health facility, and they couldn’t handle my Eating Disorder (ED) behaviors, which made me so sick. So they sent me off to treatment at the hospital. When I was there, I continued getting seizures. I was discharged with a bunch of diagnoses, such as OCD, ARFID, anorexia, depression, anxiety, seizure disorders, Tourette’s, and PTSD. Throughout this time, I tended to get sick and pick things up very easily, which continued to turn into respiratory issues. I have had chronic otitis media, meaning I get ear infections quite often for no reason, really, and sinus infections are coming for me. Every time I get sick with an acute illness, I am put on antibiotics and steroids, and this always seems to help improve all my other neuropsychiatric symptoms. I continued seeing specialists. And there was one who just didn’t listen and threw me under the Functional Neurological Disorder (FND) category. FND is one of the most common misdiagnoses for PANS patients.
I believe everyone diagnosed with FND should be screened/evaluated for PANDAS/ PANS. I was in and out of eating disorder treatment, as restricted eating was probably one of my main symptoms.
While at the hospital, they drew blood every week and noticed quite a new things were off. So I was referred to an immunologist, and I did more and more tests, but I didn’t finish getting tested by the time I left treatment. I continued to have severe symptoms while in treatment. These symptoms landed me in the ER quite a few times due to seizures. I had to relearn how to write altogether, which was quite difficult and embarrassing. My oxygen levels were very concerning. After seizures, my hands would lock up, and this still happens to this day – this is called Dystonia, which can be another symptom experienced by some PANS patients.
Anyway, when I was out of treatment, I continued tests from doctors and hospitals. It was decided after lots of tests, such as brain scans, EEGs, spinal tap, blood work, and looking at my medical history, that I had PANS and autoimmune epilepsy.
I’m grateful for the diagnosis; it helps a lot knowing how to treat it. Some treatments include antibiotics, steroids, IVIG, infusions, anti-seizure medications, anti-inflammatory medications, and medications to reduce my tics. Therapy has also been quite helpful. I still have struggles every day, some days worse than others. It has definitely changed my life in ways I didn’t think were possible. All I can hope for is remission and treatment to help. Proper medical treatment seems to manage my symptoms better for sure, but it just takes some time, I guess.
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Gabriella True
