Angie, Age 39, Cincinnati, OH
Six months ago I nearly lost my life to Anti-NMDA Receptor Encephalitis. A mostly rare condition, however very often misdiagnosed, therefore making it rather challenging to fully determine the scale of those truly affected by this life threatening and horrific condition.
I am by all accounts a healthy, active, and happy 39 year old woman. I am a wife and a mother to two beautiful young daughters, ages 4 and 7.
It was July 16th, 2019, a normal Tuesday afternoon. I work from home and was on a typical business meeting call when the first slurred word came out of my mouth. Each sentence came with a slight challenge. I knew the word I just couldn’t say the word without a stutter or slur as my jaw tightened.
By Friday, my symptoms had worsened. The right side of my face was numb, my teeth tingled, my tongue felt swollen, and my jaw felt stiff. Terrified something was really wrong I went to see my doctor. They wanted to make sure I wasn’t having a stroke, and immediately sent me to the ER for a CT scan and the first of many batches of blood work. Both returned normal so I was discharged and sent home.
The next day, my speech continued to worsen and I began having facial spasms on the right side of my face. That morning my husband, daughters and I went to our local pool. There, I had what we can an “episode.” It was likely some form of a seizure. I started having extreme facial spasms on the right side of my face and was struggling to speak. I was fearing I had early signs of MS or ALS. Then the right side of my face seized up completely and it was accompanied with a clicking sensation in my brain coupled with flashes of light with each click. My husband caught me as I fell and called 911. I was immediately sent back to the ER via ambulance.
This was the first of four hospital admits I would have over the next few weeks. I was initially treated for Bells Palsy to which I didn’t have. They performed a multitude of tests including a CTA scan, MRI, EEG, EKG, Echocardiogram with a burp test, and a vast array of blood tests. Everything came back normal. During my three days there I started to develop numbness in my tongue, lips, and toes. My thumb began twitching. The neurologist told me to avoid cold food as not to aggravate the tingling in my teeth and said I should be fine. After I was discharged, I sought a second opinion with another neurologist who assured me everything was fine and that these symptoms would likely go away.
Two weeks later my symptoms progressively got worse. Numbness continued to travel on my right side of my body, my speech continued to be difficult, I was no longer sleeping, and my behavior started changing.
It was 2am when I woke my husband to tell him I couldn’t live like this anymore. I was restless, anxious, and felt like I was dying. We packed our things and drove through the night to Cleveland Clinic. We arrived to the ER at 6am and was admitted two hours later.
Cleveland Clinic administered a 72 hour EEG, an MRI, blood work, and a lumbar puncture (spinal tap). After four days of normal results they diagnosed me with viral meningitis, discharged me, and we went home. However, I didn’t have viral meningitis.
Over the next few days my health plummeted. I was no longer eating or sleeping. I was hallucinating, hearing music, and acting erratically. My speech was awful. I was overwhelmed by loud noises and public places.
Desperate for help we went to University of Cincinnati hospital where I was denied ER attention and hospital admittance but was sent to the psychiatric holding tank. They promised special care and a private room for sleep. My husband didn’t want to leave me there, but I pleaded to stay as I longed for rest. He begrudgingly complied to my request. As I walked through the doors of what I thought would lead to a private room were rows of beds separated by only a curtain. There were open exam rooms and a nurse’s station at the center that was completely sealed off. There were patients walking around mumbling to themselves, making erratic noises, and locked in a deep stare. It was dirty, scary, and I immediately wanted out.
Through the small holes of the plexiglass I begged a nurse to call my husband. She pointed to the phone on the wall. I called him and told him that I’d made a mistake and needed him to come back and get me out of there. He tried but the hospital denied him. I panicked and in my helpless state I started calling 911 from inside the facility. I called at least 20-30 times. Finally, a sheriff showed up at our home in the middle of the night to notify my husband of my numerous 911 calls and that he would help my husband get me out. It worked. At 2am, my husband was waiting for me at the hospital door and we walked out. It was one of our lowest points.
A few days later, recognizing my deteriorating state, my husband sent our daughters to their grandparents and loaded up once again bound for Cleveland Clinic. While in the ER at Cleveland Clinic for the second time, the treating physician asked if I had received an abdominal scan. To which we said no and why. He suspected a teratoma could be present.
I was admitted yet again and my health quickly spiraled. I don’t remember much over the next four weeks, but I’m told by my husband that sometimes I was unresponsive to my name or basic questions, and sometimes I couldn’t dress myself or comprehend small tasks being asked of me. I had uncontrollable laughing spells and uncontrollable rocking and shaking. I was defiant and scared. Then, I went completely catatonic. It was terrifying for my family to watch with such helplessness. Neurology wanted to move me to the Psychiatric unit because they couldn’t find any neurological problems. However, the psychiatric team wasn’t convinced I had a psychiatric problem. My husband and family never left my side and pushed the neurology team to not give up on me and run more tests.
I was finally sent for an abdomen scan and that’s when they found the teratoma on my left ovary. This was the physical proof neurology needed. They ordered a second spinal tap, more blood work, and surgery to remove the teratoma and the ovary. My spinal fluid tested positive for Anti-NMDA and they immediately began a high dosage of steroids two days before my surgery. Three days after surgery I began my first of five plasmapherisis treatments. My speech returned and my memory returned around this time as well.
On September 6, 2019 my incredible medical team discharged me from Cleveland Clinic and I went home. I was scared on the drive home. I couldn’t remember who I was, but when I walked through our front door and hugged my girls for the first time in over a month the fear melted away and it felt unbelievable. Over the next few weeks I started to return to my normal self. I stayed on prednisone through the end of November along with a creative sleep cocktail to combat the side effects of the steroids. I went back to work at the end of October. It took a few weeks to adjust but it felt good to have a routine again and think about something other than what I had just been through.
It’s been six months since I was diagnosed and by the grace of God I’m back to myself again. I’m beyond blessed to have a husband that never left my side, was my biggest advocate, and fought for my life. We have an incredible family who supported us throughout the entire nightmare by taking care of our girls and our home. We have amazing friends who supported us in presence and prayer. I have an unbelievable work family that was patient, helpful, and supportive every step of the way.
My doctors are surprised by my speedy recovery and my prognosis is good.
I tell my story to encourage others to be advocates for your health and those you love. Be persistent and don’t give up or lose hope. I also share my story to bring more awareness to Anti-NMDA encephalitis as it is so often misdiagnosed.