Doctors Completely Missed My Brain Swelling and Sent Me to a Mental Health Facility for Schizophrenia Instead
This article is part of Health's series, Misdiagnosed, featuring stories from real women who have had their medical symptoms dismissed or wrongly diagnosed.
I'm probably just dehydrated. That's what I told myself when I noticed a twitch in my right pinky finger. It was slight—like an eye twitch that no one else can see, but you can feel—so I figured it wasn't anything serious.
Blaming the twitch on dehydration made sense. I was 18; I had just graduated high school and spent the past two weeks celebrating senior week in Ocean City, Maryland, near my hometown of Baltimore. Besides not sleeping enough, I was getting too much sun and not drinking enough water. During the last few days at the beach, I even started feeling rundown. Clearly I was not taking care of my body like I usually did.
So when the twitch started, I increased my water intake to a glass with every meal, and then a few glasses throughout the day. Still, the twitch only got worse. Soon it evolved into more of a spasm; all the fingers of my hand would cramp up and lock in a claw-like position. I was freaked out. If this is from dehydration, I thought, I don't know what else I can do.
My mom agreed. "Keep drinking water," she said, after I finally brought it up to her.
A few days later, when I went to my hostess job at a restaurant, something strange happened. I was taking reservations over the phone when I began having trouble speaking—it felt like I had to physically force words to come out of my mouth. I knew what I wanted to say, but it was like my mind and my mouth weren't communicating.
My mom picked me up at work after I called her and hysterically told her what was happening. She listened to me talk and also noticed I was struggling to force words out. I also began slurring my words to the point where I sounded drunk. That's when my mom immediately called my pediatrician's office for an emergency appointment and took me straight there.
After checking me out, my doctor made a diagnosis: physical symptoms of anxiety. I was so confused. I'd never been clinically diagnosed with anxiety before, but I knew what anxiety was—and this wasn't it. I broke down crying in his office because I felt like I was only getting further away from the truth of what was really going on with me.
Still, my pediatrician told me to set up an appointment with a therapist, so I did. It was awful. The therapist told me to do exercises like writing down my future goals to help relieve anxiety. (She figured I was anxious about starting college in the fall.) All I could think about was the worsening twitching in both hands now, and my slurred speech.
After that appointment, I completely shut down—I stopped talking to my friends and I barely left my room. So my mom made an appointment with a psychiatrist. It was still assumed I was suffering from anxiety, so she prescribed anti-anxiety medication to help me "calm down."
Nothing helped; I was only getting worse. On top of twitching and slurring words, I developed insomnia. I kept telling my parents that when I went to sleep, I wasn't really sleeping; my body felt asleep but my brain was wide awake. That sent me into a deep depression and psychosis. I began to hear voices and sounds in my head that weren't there: a man talking to me, pots and pans banging, dogs barking. Sleep medications didn't help. I felt like I was going insane.
At the same time, my health continued to deteriorate. My psychiatrist prescribed me Olanzapine, an anti-psychotic, which turned me into a zombie. I lost 30 pounds, my face and body looked thin and sunken, my twitching and spasms had spread to my toes, and walking so difficult I moved like a 90-year-old woman.
At my next psychiatrist appointment (I started seeing her multiple times a week), I had a complete mental breakdown. When I mentioned I had thoughts of suicide, I was immediately taken to a nearby mental health treatment center. The conditions were so awful my parents had me released just 3 days later.
One day, when I was feeling better than usual, my family and I went to dinner at a nearby restaurant. The last thing I remember was sitting at the dinner table. I completely blacked out, but my parents later told me that I dropped my fork during an arm spasm, began rocking back and forth, and repeated the same sound over and over again.
In that moment, it was clear something was neurologically wrong with me—this wasn't just anxiety. I had an appointment with a neurologist later that week, but my parents took me to the emergency room. The ER doctors also believed I was suffering from a mental health condition, schizophrenia this time. (It likely didn't help that my chart said I was recently at a mental health treatment center.) The staff forced me to sleep with my door open—I was on a type of suicide watch—but my parents had me discharged in the middle of the night because I couldn't sleep.
All of the frustration leading up to my neurology appointment upset my parents, so much so that my dad nearly tried to cancel the appointment. He was sick of doctors telling me my health issues were mental health disorders and treating me like a psychiatric patient.
I'm glad he didn't cancel. That neurologist, James Wolf, MD, would end up giving me the right diagnosis. When I saw Dr. Wolf, he noticed my struggles speaking and walking. He looked me in the eye and said, "I believe you and I will diagnose you. I know no one else believes there's something wrong with you, but I believe you."
Dr. Wolf ran a lot of tests—two MRIs, an EEG, various blood tests—and all came back inconclusive. Finally, Dr. Wolf ordered a specialized blood serum test. It came back positive for a condition called anti-NMDA receptor encephalitis. (It's also known as NMDAR Encephalitis.)
What this means, Dr. Wolf explained to me at the time, is that I have antibodies in my body attacking my brain—specifically the NDMA receptors, which play a huge part in learning and memory formation. This caused brain inflammation. Essentially my brain began to swell because my own body was actually attacking my brain tissue.
After he properly diagnosed me, I was almost ecstatic, even though he also told me to immediately get to the hospital, since my organs were beginning to shut down. I was just happy to have a diagnosis and a solution plan.
At the hospital, I started treatment: high doses of a steroid to help the inflammation, spinal taps to check my progress (spinal fluid is a better indicator of anti-NMDA receptor encephalitis than blood), and infusions of the drug rituximab, to help my immune system recover.
I was in the hospital for just five days, but my entire recovery process was a long ordeal. I was diagnosed in July 2018, and only officially stopped all of my medications, including the antidepressants I was prescribed before my diagnosis, in June of this year. I even took a semester off college. I was supposed to begin at Towson University in August 2018, but I pushed back my start date to January 2019.
Doctors still don't know what caused my anti-NMDA receptor encephalitis—both because it could've been triggered by a variety of things (a virus, a bacteria, environmental factors, a genetic disposition) and also due to the fact that it's still so new. (The first case was discovered in 2007.) Though I've recovered, I have a 15% chance of experiencing the condition again. But because of m regular neurology appointments, and my own close monitoring of my health, I'm not worried.
The most dangerous thing about my entire experience, and what I want others to know, is that you need to fight to be your own advocate. I have to assume there were many people before me with this disease who were treated for a mental health disorder when their brain was actually swollen because of a neurological condition.
It's one of the worst feelings in the world to know that something is wrong with you and that you're not yourself—yet have medical professionals tell you that you're just a stressed teenager worried about college. My note to doctors: Don't make generalizations about patients. My note to patients: Don't accept a diagnosis you don't fully believe in.
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