Imagine you’re a college student who has never had to deal with anything more mentally distressing than some minor anxiety. Now, imagine you’re having coffee with a friend when, all of a sudden, you’re gripped by crippling paranoia. In a matter of minutes, you go from rational to 100 percent convinced that the trucks outside are following you around.
When Emily Gavigan was 19 and a sophomore at the University of Scranton, she didn’t have to imagine it. This was her horrifying reality, and it had hit her out of the blue.
When Emily’s mom took her to a psychiatrist’s office the next day, the young woman refused to speak, convinced cameras were monitoring her every move.
Her parents wondered if Emily had been drinking or had taken some type of drug, but the truth was nothing that commonplace or simple.
Even after spending five weeks in a psychiatric ward and being given drug after drug, she still wasn’t getting better.
Despite this, Emily returned to school and did the best she could. Then, the physical symptoms began. Emily had trouble speaking, walking, and using her hands.
She ended up in the emergency room, and that’s where the medical mystery finally began to unravel.
Dr. Mitchell Gross, a neurologist at Geisinger Wyoming Valley Medical Center, was the first to suspect that Emily’s problems weren’t psychological but physical.
Her official diagnosis? Anti-NMDA receptor encephalitis, a rare but potentially lethal autoimmune disorder.
What Is Anti-NMDA Receptor Encephalitis?
Anti-NMDA receptor encephalitis is an autoimmune disorder in which antibodies attack NMDA (N-methyl-D-aspartate)-type glutamate receptors at central neuronal synapses.
To put it in more basic terms, the immune system turns against certain parts of the brain, mainly the temporal and frontal lobes, triggering memory and speech problems and emotional and behavioral problems, respectively.
What Are the Causes of Autoimmune Encephalitis?
Viral Infection
The most common cause of any type of encephalitis is the herpes simplex virus, which causes both cold sores and genital herpes, the varicella-zoster virus, which causes chickenpox and shingles, and the rubella virus, which causes measles and mumps.
Other viruses that can cause autoimmune encephalitis include:
- Arboviruses (viruses carried by insects)
- Chickenpox (very rare)
- Epstein-Barr
- HIV
- MMR (measles, mumps, rubella) vaccine*
* According to the National Vaccine Information Center, approximately one in three million children who receive the MMR vaccine develop encephalitis. However, rates of encephalitis in the days before routine vaccination reached as high as one child in every 1,000. To put it another way, encephalitis was roughly 3,000 times more common before a vaccine was available.
Ovarian Teratoma
Young women who have an ovarian teratoma can be very susceptible to developing autoimmune encephalitis. An ovarian teratoma is an unusual but benign cyst that contains a diverse array of tissues, including bone, neural tissue, teeth, and hair.
This type of cyst develops from a primary oocyte retained in the ovary, which can give rise to the formation of these mature tissues.
It is important to note that African American women are more likely to develop a teratoma than other ethnic groups.
Bacteria or Fungi
From a study published in the Journal of Clinical Neurology:
“Bacterial causes include listeria, atypical presentations of streptococcus, syphilis, Lyme disease, and tuberculosis. Fungal causes such as Cryptococcus or aspergillis are particularly likely in immunocompromised patients.”
Symptoms of Anti-NMDA Receptor Encephalitis
The symptoms of this condition present in stages. We’ll take a look at those in more detail in a moment.
First, let’s take a look at these symptoms at a glance:
- Agitation
- Anxiety (severe)
- Ataxia
- Decreased consciousness levels
- Distorted vision
- Cognitive impairment
- Coma
- Excessive eating without feeling satiated
- Food and drink tasting inedible and/or triggering nausea
- Delirium
- Hallucinations (auditory or visual)
- Inability to sleep
- Loss of appetite (complete or partial for long periods of time)
- Loss of balance
- Loss of inhibition
- Loss of speech
- Memory problems
- Muscle tics (and other involuntary movements)
- Paranoid thoughts
- Rapid, pressured, or involuntary speech
- Seizures
- Slow or slurred speech
- Weakness or numbness in part of the body
Now, let’s look at how this dangerous disorder progresses:
1. Early Signs and Symptoms
Early signs and symptoms of this condition are similar to the flu. They include headache, fatigue, upper respiratory symptoms, nausea, diarrhea, muscle aches, and fever. These symptoms typically occur an average of five days prior to onset of behavioral changes.
The most prominent psychiatric symptoms during this stage include delusional thoughts, disorganized thinking, bizarre behaviors, paranoid thoughts, and perceptual disturbances.
In addition to behavior changes, there will also be symptoms of cognitive deterioration such as abnormal speech, short-term memory loss, confusion, and difficulties performing routine tasks.
A progressive sign of declining speech will include mumbling, mutism (inability to speak), echolalia (repetition of words spoken by another), perseveration (word, phrase, or gesture repetition), and alogia (complete lack of speech).
The psychiatric phase of this condition appears to last between one and three weeks.
2. Neurological Complications
When autoimmune encephalitis enters into the second phase, more severe brain damage occurs if the condition is left untreated. Decreased responsiveness, catatonia, mutism, increased agitation, dissociation, and hypoventilation (breathing at an abnormally slow rate) are common signs.
Seizures occur in 80 percent of cases and can be either partial motor or complex.
During this stage, patients must be treated in an intensive care setting.
3. Recovery and Relapse
The recovery and relapse process generally takes three to four months with appropriate supportive care and therapy. Autonomic and respiratory functions are the first to normalize, followed by the cessation of involuntary movements.
Cognitive and psychiatric functions are often slowest to improve, and many patients will experience a resurgence in agitation and psychotic disturbances as the brain goes through its complex healing process.
4. Late-Phase Cognitive and Behavioral
Approximately 85 percent of patients who make a full recovery still experience significant cognitive and behavioral abnormalities following hospital discharge. Moreover, it is not uncommon for a patient to have amnesia for the entire acute phase of the illness.
As terrifying as this disease is to read about, it’s very important to be aware of it. Oftentimes, doctors are far too quick to dole out prescription medications for psychiatric symptoms without looking for their root cause.
How Is Emily Doing These Days?
It took several rounds of medication and therapy before Emily’s parents were able to bring her home. Although it took a while for Emily’s personality to come back completely, it eventually did. She’s now 28 years old, living in the Poconos, and working for a pharmaceutical company. She is eager to continue sharing her story because she knows there is someone out there who needs to hear it.
Be Your Own Best Health Advocate
If you ever experience a sudden onset of symptoms like the ones mentioned above, get emergency medical attention immediately and asked to be tested for autoimmune encephalitis. Proper care is absolutely essential to recovery, and no time should be wasted in the psychiatric ward while your brain rapidly deteriorates.
The conventional medical world can be a scary one, which is why it’s so important to be your own best health advocate!
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