Susannah Cahalan’s Revealing TEDxTalks: Do generic psychiatric labels deprive mental health patients their fundamental and constitutional rights?

Posted by Maria Mangicaro
Mental Health Advocate

In her 2013 TEDxTalks, journalist Susannah Cahalan shares her experiences that took place during a month-long psychotic episode.   Her mental suffering was  induced by an underlying medical condition.

Susannah’s talk reveals the serious flaw in our mental health care system of how patients suffering from psychosis and mania are simply labeled with generic DSM5 diagnoses using with what psychiatrists refer to as a “Chinese Menu” approach.

This unscientific approach fails to use Best Practice Assessment standards and leaves patients at risk of unnecessary and prolonged suffering.

It has been known for several years that persons with serious mental illness die younger than the general population and recent evidence reveals that the rate of serious morbidity (illness) and mortality (death) in this population has accelerated.  In fact, persons with serious mental illness (SMI) are now dying 25 years earlier than the general population. [1]

The failure of psychiatry to use Best Practice Assessment standards must be considered as a contributing factor in order to fight this epidemic of premature death among persons deemed “mentally ill”.

The use of generic labels for psychotic disorders also subjects patients to harmful side effects of antipsychotic medications.  Patients with underlying medical conditions must face the painful stigma of being labeled a “mentally ill” person and large mental health advocacy groups promote the concept of being a life-long mentally ill person.

Psychiatrists who fail to diagnose their patients using Best Practice Assessment of Psychosis guidelines place their patients at risk of lengthy and expensive forced hospitalizations.  In most cases, regardless of effectiveness, patients are responsible to pay for forced treatment.

In Susannah case, she claims her parents were adamant that her treatment take place in a hospital setting and they fought to keep her from being admitted into a psychiatric facility.  She now believes her family’s advocacy to keep her out of a psychiatric hospital is what saved her life.

During her speech, Susannah states to the “untrained eye” she would have been considered a schizophrenic.   She even reads out loud the DSM5 criteria for schizophenia which matched up to her symptoms.

Susannah explained that her treating psychiatrists considered her to be an otherwise healthy, normal 24-year old woman.  In some of her interviews she claims, the first neurologist she saw told her there was nothing wrong with her. A psychiatrist told her she had bipolar disorder and prescribed antipsychotic medications.  A second neurologist diagnosed her with “alcohol withdrawal syndrome” and prescribed different psychiatric medication.   While hospitalized, her psychophamacologist diagnosed her with schizoaffective disorder, what she describes as a combination of schizophrenia and bipolar disorder.

In her TEDxTalk, Susannah admits that she was extremely lucky to come under the care of a neurologist with an excellent reputation.  Her doctor, Dr. Souhel Najjar, is a Neurologist, Neurophysiologist, Epileptologist and a Neuropathologist at NYU Langone Medical Center.  He is also the Clinical Associate Professor of Neurology at the NYU School of Medicine.

While the other doctors and psychiatrists ignored many of Susannah’s physical manifestations, which included seizures and high blood pressure, Dr. Najjar took that information seriously and spent a considerable amount of time obtaining information about her case from her parents.

After a month-long hospitalization and very costly testing, a very simple “Draw a Clock” test put Dr. Najjar on the path to making the correct diagnosis.   This no-cost test alerted the neurologist to Susannah’s underlying condition of anti–NMDA receptor autoimmune encephalitis

For Susannah, it took only a relatively simple combination of steroids and immune therapies for her to recover from symptoms that were considered a severe mental illness.

Susannah now believes it is exceedingly important for  psychiatry to adopt a greater vigilance in diagnosing patients to rule out possible neurological causes of behaviors that can be misdiagnosed as severe mental illness.  

Dr. Najjar estimates that nearly 90 percent of those suffering from autoimmune encephalitis go undiagnosed.

“It’s a death sentence when you’re still alive,” Najjar said. “Many are wasting away in a psych ward or a nursing home.”


Susannah writes this about the stigma of being labeled with severe mental illness:

Another, less obvious outcome is that early on in my treatment, when I was thought to be suffering from a psychiatric disorder, my care was less sympathetic than it was later, when I was diagnosed with a neurological disease. Why is this? And how can we remove this stigma attached to mental illness? At the height of my disease, nothing distinguished me from a person with schizoaffective disorder or schizophrenia—the only difference came later: when I was cured. I don’t know how we change the systematic treatment of mental illness in this country, but clearly it needs to be rethought.

I first read about Susannah’s case on the blog of mental health advocate Pete Earley.  It was shocking to realize that Pete failed to comprehend the importance of her case.  Even more upsetting was Pete made a joke out of it and stated, “Susannah’s constitutional right to be crazy was clearly violated.”

Mental health advocates must take seriously the problems created by the generic use of psychiatric labels used to describe and treat symptoms of psychosis.

If we consider Susannah’s case and the decision in Wyatt v. Stickney  325 F.Supp. 781 (M.D.Ala. 1971), a key issue was that patients have a “constitutional right to receive such individual treatment as will give each of them a realistic opportunity to be cured or to improve his or her mental condition.”

Our mental health patients under observation for psychosis have the fundamental right to know their diagnosis based on Best Practice Assessment standards.

By consensual agreement within the American Psychiatric Association (Diagnostic and Statistical Manual III-revised, 1987), psychiatric diagnoses are descriptive labels only for phenomenology, not etiological or mechanistic explanation for syndromes. Thus, a psychiatric diagnosis labels a pattern of signs and symptoms, but offers no hypothesis concerning the mechanism(s) of the clinical phenomena.(Davidoff et al., 1991).

Our citizens loose their personal freedom and right to contract services when they are rubber-stamped with generic psychiatric labels based on descriptions only.  Psychiatric labels create a class of people who can be legally forced into contracting the services of mental health facilities and limited providers of psychiatric services.

The “Chinese Menu” approach of using the DSM5 is an unfair and unethical medical practice that seriously jeopardizes the health, safety and welfare of the public.

Psychiatry must move towards adopting Best Practice Assessment Standards and integrative care for their patients.

Published on Dec 7, 2013

“Lucky” is how Susanna describes the fact that she is here, today, with us at TEDxAmsWomen. She remembers all the people who suffered the same before 2007, the year that the diagnosis was given a name. “Lucky” that this happened to her only 2 years after that, which meant she wasn’t put in a mental institution.

– See more at:


Has an angel shown the way? Etiological and therapeutic implications of the PCP/NMDA model of schizophrenia

Schizophr Bull. 2012 Sep;38(5):958-66. doi: 10.1093/schbul/sbs069.

Has an angel shown the way? Etiological and therapeutic implications of the PCP/NMDA model of schizophrenia.


Department of Psychiatry, Nathan Kline Institute for Psychiatric Research/Columbia University College of Physicians and Surgeons, Orangeburg, NY 10962, USA.


Over the last 20 years, glutamatergic models of schizophrenia have become increasingly accepted as etiopathological models of schizophrenia, based on the observation that phencyclidine (PCP) induces a schizophrenia-like psychosis by blocking neurotransmission at N-methyl-D-aspartate (NMDA)-type glutamate receptors. This article reviews developments in two key predictions of the model: first, that neurocognitive deficits in schizophrenia should follow the pattern of deficit predicted based on underlying NMDAR dysfunction and, second, that agents that stimulate NMDAR function should be therapeutically beneficial. As opposed to dopamine receptors, NMDAR are widely distributed throughout the brain, including subcortical as well as cortical brain regions, and sensory as well as association cortex. Studies over the past 20 years have documented severe sensory dysfunction in schizophrenia using behavioral, neurophysiological, and functional brain imaging approaches, including impaired generation of key sensory-related potentials such as mismatch negativity and visual P1 potentials. Similar deficits are observed in humans following administration of NMDAR antagonists such as ketamine in either humans or animal models. Sensory dysfunction, in turn, predicts impairments in higher order cognitive functions such as auditory or visual emotion recognition. Treatment studies have been performed with compounds acting directly at the NMDAR glycine site, such as glycine, D-serine, or D-cycloserine, and, more recently, with high-affinity glycine transport inhibitors such as RG1678 (Roche). More limited studies have been performed with compounds targeting the redox site. Overall, these compounds have been found to induce significant beneficial effects on persistent symptoms, suggesting novel approaches for treatment and prevention of schizophrenia.

[PubMed – in process]
[Available on 2013/9/1]


Anti-NMDA receptor encephalitis: an important differential diagnosis in psychosis

Br J Psychiatry. 2011 Dec;199(6):508-9. Epub  2011 Oct 7.

Anti-NMDA receptor encephalitis: an important differential diagnosis in psychosis.


Department of Psychiatry, Royal College of Surgeons in Ireland, RCSI Education and Research Centre, Beaumont Hospital, Dublin 9, Ireland.


We present four cases of confirmed anti-NMDA receptor encephalitis; three presented initially with serious psychiatric symptoms and the other developed significant psychiatric symptoms during the initial phase of illness. Brain biopsy findings of one patient are also described. Psychiatrists should consider anti-NMDA receptor encephalitis in patients presenting with psychosis and additional features of dyskinesias, seizures and catatonia, particularly where there is no previous history of psychiatric disorder.

[Fast and spectacular clinical response to plasmapheresis in a paediatric case of anti-NMDA encephalitis].

Rev Neurol. 2012 Apr 1;54(7):420-4.
[Article in Spanish]


Hospital Universitario 12 de Octubre, Madrid, Espana.



Autoimmune encephalitis against N-methyl-D-aspartate (NMDA) receptors is being diagnosed more and more frequently in the paediatric age. It should be suspected in children with psychiatric symptoms, encephalopathy, abnormal movements or epileptic seizures. Paraneoplastic cases are less frequent than in adults.


We report the case of a boy, 2.5 years of age, with subacute encephalopathic signs and symptoms and epileptic seizures followed by behaviour disorders, neurological regression, dyskinesias and insomnia. Results of a cerebrospinal fluid study were normal, the magnetic resonance scan of the head revealed a focal periventricular lesion and diffuse leptomeningeal uptake; moreover, the serial electroencephalograms showed high-amplitude delta activity interspersed with generalised intercritical epileptiform activity. The patient was given empirical treatment with high doses of corticoids and intravenous immunoglobulins with no response. After showing up positive for antibodies against the NMDA receptor, plasmapheresis was begun, which led to his swift and spectacular recovery. After more than 18 months’ follow-up, his sequelae are limited to mild behavioural and language alterations. He has had no relapses and has not needed any kind of maintenance treatment.


Anti-NMDA encephalitis is a treatable disorder and, sometimes, the first evidence of an underlying neoplasia, which makes its early recognition and treatment essential. Treatment of the non-paraneoplastic forms are based on immunotherapy: glucocorticoids, intravenous immunoglobulins, plasmapheresis and immunosuppressants. Plasmapheresis can bring about a fast, spectacular improvement.

Brains on Fire: Moments of “Medication Madness” creating lifetimes of sadness

By Maria Mangicaro

In her new book “Brain on Fire:  My Month of Madness“, NY Post reporter Susannah Cahalan chronicles her month-long battle with psychotic symptoms and the events that led up to her accurate diagnosis and treatment for anti-NMDA receptor encephalitis, a rare autoimmune disease that can attack the brain. Cahalan stated doctors think the condition may account for cases of what was believed to be “demonic possession” throughout history.

As Dr. Peter Breggin reveals in his book “Medication Madness:  The Role of Psychiatric Drugs in Cases of Violence, Suicide, and Crime“, many of today’s psychotic demons come in pill form and for more and more families, moments of medication madness are creating lifetimes of tragedy and sadness.  The failure to recognize obvious cases of Medication-Induced psychosis and crime indicates a lack of responsiblity on the part of mainstream mental health advocates and mainstream media.

Filicide is the deliberate act of a parent killing his or her own child.  Sometimes there is a combination of murder and suicide in filicide cases and filicide is viewed as a complicated and multifactorial crime.  One of the most influential classifications of child murder was created in 1969 by Phillip Resnick.   The classifications include the “Acutely psychotic filicide” by which the parent, responding to psychosis, kills the child with no other rational motive.  [1]

With the advent of the 911 emergency system, we are now able to call into question factors of medication-induced psychosis that may be easily recognized by experienced dispatchers.   A skilled 911 operator can easily extract necessary information from callers quickly and efficiently, keeping the callers calm and update them on the status of the emergency services they have dispatched.   In cases of acutely psychotic filicide, the 911 call can play an important role.

This past August New Jersey officials reported a tragic filicide-suicide involving a 33-year-old mother who admitted to a 911 operator that she was currently being prescribed the anti-depressant Prozac.

Police found the body of 2-year-old Zahree Thomas after his mother, Chevonne Thomas, placed a rambling, sometimes incoherent call to 911.   Thomas openly admitted to the dispatchers that she had stabbed her son and in a gruesome discovery the toddler’s head was found in the freezer.

During the 911 call the dispatcher apparently recognized Chevonne’s apathetic tone and bizarre behavior may have been a result of taking a prescription medication and the operator asked if she was taking any.  Chevonne acknowledged that she was on the anti-depressant Prozac but didn’t take it that day.

“I didn’t take it today, but I should have. I should have,” she said.

Minutes later Chevonne fatally stabbed herself in the neck.  Police suspect illegal drugs may have been involved as well.

Ryan Ehlis admitted to filicide in 1999 and was charged with the murder of his infant daughter.  The charges were dismissed after various doctors testified Ryan suffered from an “Amphetamine-Induced Psychotic Disorder” (DSM-IV Code 292.11), caused by the ADHD medication Adderall.  The Court determined Ryan did not have the necessary criminal responsibility as it was determined the psychiatric medication caused his psychotic state.

Medication-Induced Psychosis could have also played a role in the filicide cases of Dena Schlosser, Otty Sanchez, Julie Schenecker, Debra Jeter, and David Crespi.

After the 2011 murder of her two teenage children, police recovered over 500 pills from the Schenecker home.

David Crepsi’s wife Kim is a a friend and a fellow member of ISEPP.   After speaking with Kim on numerous occasions and listening to the 911 tapes myself, there is no doubt in my mind that David’s case was one of a Substance Induced Psychosis.

Within seconds of speaking with him, the 911 operator easily recognized that David was heavily medicated stating; “Keep talking to me cause you sound like you’re a little bit tired and stuff, and we’re wondering if you maybe took too much medication,”  repeatedly the 911 operator pointed to medications as the cause of David’s apparent psychotic state.

With newer drugs being more specific in their effects on the brain, clinicians must be alert to the possibility that the worsening of the patient’s mental status and behavior may be caused by the medications they are taking rather than simply attributing it to a worsening of their underlying illness. [cit]    Attorneys, as well, must be educated in etiological factors that can induce a psychotic state and criminal behavior.

Below are clips from the FDA Advisory Commitee hearing  on Prozac that took place September 20th 1991.

New York Post reporter Susannah Cahalan and Emily Galigan talk about being misdiagnosed by psychiatrists and her new book “Brain on Fire: My Month of Madness”

Published on Nov 16, 2012 by

Brain on fire  Rare disease mistaken for mental illness
Doctors told Bill Gavigan his daughter Emily’s sudden paranoia was likely schizophrenia, but after seeing Susannah Cahalan on TODAY describing the same symptoms, he demanded Emily be tested for the her rare disease. Bill, Emily, and Susannah talk about the frightening illness outlined in Susannah’s new book, “Brain on Fire:  My Month of Madness.”

Autopsy of a “Mental Illness” Epidemic

Autopsy of a “Mental Illness” Epidemic

By Maria Mangicaro

The 2005 widely publicized debate between Matt Lauer and actor Tom Cruise demonstrated the sheer “schizophrenic” nature of mental health advocacy itself.

The one fact advocates seem to agree upon is the number of people in the U.S. entering our mental health care system is skyrocketing.  Unfortunately, many advocates, experts and mental health journalists are at odds speculating on what is causing this epidemic of “mental illness” and what it will take to remedy the situation.

Many advocates see the insurmountable human suffering as a critical agenda and are especially concerned over the increasing mental health needs for our military veterans in the near future.

The fact that mental health advocates are at each other’s throats is complicated by conflicting research, skeptical published information, the stigma of mental illness, persuasive public lectures, selective  story telling from journalistic perspectives, money-making objectives, personal agendas, personal experiences and flawed interpretations.

Public opinion and the decision-making process regarding forced treatment are greatly influenced by a variety of mental health advocates, a few of which dominate the media more than others.

The internet is playing a critical role in the advocacy agenda for individuals considered to be suffering from severe “mental illness”, many of whom are among a marginalized population and do not have access to the internet.  Advocacy must be met with equal and fair representation for the voice of those who can not speak for themself and do not have access to what is being said on their behalf.

The conflict among mental health advocates is extremely questionable as many advocates are paid large sums of money for their work as an advocate.  The impact of best-selling books must also be considered as journalists do not hold the same credentials and liability as mental health professionals.

The topic of “mental illness” is very broad, there is a critical need for advocates to clearly define what it is they are advocating for and for whom.

“Treatment advocacy” must be defined, otherwise is it should be considered advertisement promoting the use of psychiatric medications.

The value of accurately assessing and treating the underlying medical conditions and substances known to cause psychotic/manic states is a common sense position for advocates to take.   It is unethical to advance anything less than best practice standards for individuals suffering from psychosis/mania.

Mental health advocates and invetigative journalists need to stop butting heads, bullying each other with opinions and put their heads together in order to make medical necessary, cost-effective treatment available to individuals suffering from psychosis/mania.

A good analogy to consider is the story of the Elephant and the Blind Men.


Once upon a time, there lived six blind men in a village. One day the villagers told them, “Hey, there is an elephant in the village today.”

They had no idea what an elephant is. They decided, “Even though we would not be able to see it, let us go and feel it anyway.” All of them went where the elephant was. Everyone of them touched the elephant.

“Hey, the elephant is a pillar,” said the first man who touched his leg.

“Oh, no! it is like a rope,” said the second man who touched the tail.

“Oh, no! it is like a thick branch of a tree,” said the third man who touched the trunk of the elephant.

“It is like a big hand fan” said the fourth man who touched the ear of the elephant.

“It is like a huge wall,” said the fifth man who touched the belly of the elephant.

“It is like a solid pipe,” Said the sixth man who touched the tusk of the elephant.

They began to argue about the elephant and every one of them insisted that he was right. It looked like they were getting agitated. A wise man was passing by and he saw this. He stopped and asked them, “What is the matter?” They said, “We cannot agree to what the elephant is like.” Each one of them told what he thought the elephant was like. The wise man calmly explained to them, “All of you are right. The reason every one of you is telling it differently because each one of you touched the different part of the elephant. So, actually the elephant has all those features what you all said.”

“Oh!” everyone said. There was no more fight. They felt happy that they were all right.

The moral of the story is that there may be some truth to what someone says. Sometimes we can see that truth and sometimes not because they may have different perspective which we may not agree too. So, rather than arguing like the blind men, we should say, “Maybe you have your reasons.” This way we don’t get in arguments. In Jainism, it is explained that truth can be stated in seven different ways. So, you can see how broad our religion is. It teaches us to be tolerant towards others for their viewpoints. This allows us to live in harmony with the people of different thinking. This is known as the Syadvada, Anekantvad, or the theory of Manifold Predictions.

The public is looking for answers to the “Mental Illness” Epidemic. 

Advocates need to work together to find best practice solutions.

What is causing the skyrocketing number of individuals to suffer psychotic and manic symptoms?

Is it being caused by Invisible Plagues, Toxic Exposure, Medication Mis-management?

Where can we find the solutions to our Mental Health Care Madness?

As an advocate, it is my belief that all individuals labeled with and treated for psychosis/mania are entitled to informed consent, accurate assessment and treatment options.

No individual should be forced to contract the services of facilities or providers without having the benefit of integrated care and integrative psychiatry.   In cases of psychosis/mania, determining the cause of the symptoms means an overall healthier life for the forcible “treated” patient and a movement towards Participatory Medicine in mental health care.

It is my hope that advocates from all organizations will support a United Advocacy Agenda in favor of Best Practice Assessment of psychosis and acceptance of participatory concepts for those labeled “mentally ill”.

It is my goal to create a clear and convincing position that carefully considers all other dominating perspectives on the treatment of psychotic symptoms.

I welcome comments, suggestions and constructive feedback.

Here is a list of some popular books that make a critical assessment of the “mental illness” epidemic and should be held to strict scrutiny:

The Insanity Offense: How America’s Failure to Treat the  Seriously Mentally Ill Endangers Its Citizens by E. Fuller Torrey

Invisible Plague:  The Rise of Mental Illness from 1750 to the Present by Dr. E. Fuller Torrey

Medication Madness: The Role of Psychiatric Drugs in Cases  of Violence, Suicide, and Crime by Dr. Peter Breggin

Mad in America: Bad Science, Bad Medicine, and the Enduring  Mistreatment of the Mentally Ill by Robert Whitaker

Anatomy of an Epidemic: Magic Bullets, Psychiatric Drugs, and the Astonishing Rise of Mental Illness in America by Robert Whitaker

Brain on Fire:  My Month of Madness by Susannah Cahalan

Crazy: A Father’s Search Through America’s Mental Health Madness by Pete Earley

TODAY: One woman’s tale of ‘madness’ saves another from rare auto-immune disease

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Doctors told Bill Gavigan his daughter Emily’s sudden paranoia was likely schizophrenia, but after seeing Susannah Cahalan on TODAY describing the same symptoms, he demanded Emily be tested for the her rare disease. Bill, Emily, and Susannah talk about the frightening illness outlined in Susannah’s new book, “Brain on Fire.’

By Lisa Flam

If Susannah Cahalan hadn’t told her story of being stricken with a rare autoimmune disease that looked like psychosis, Emily Gavigan might not be here today.

It was January 2009, when Gavigan, a happy-go-lucky 19-year-old college sophomore on the dean’s list, started to act strangely, speaking rapidly and growing increasingly paranoid. She checked herself into a psychiatric hospital, where doctors thought she might be suffering from schizophrenia.

“I thought that trucks were following me and people were out to get me,” Gavigan told TODAY.

After doctors told her family she would be unlikely to be able to return to school or hold a job, her aunt called her father to tell him that she saw Cahalan discussing her illness on the TODAY show that morning.

“She has this terrible disease that sounds exactly what Emily has been going through,” Emily Gavigan’s father, Bill Gavigan, recalled his sister telling him over the phone.

Read an excerpt of Cahalan’s book, “Brain on Fire”

Cahalan was a young New York Post newspaper reporter when she began suffering from paranoia and hallucinations, ultimately ending up in a catatonic state. Thanks to one doctor’s sleuthing and persistence, she was ultimately diagnosed with anti-NMDAR encephalitis, a disease in which the immune system attacks the brain. Cahalan recovered, and shared her story by appearing on the TODAY show in 2010 with the hope of helping others.

And she has done just that, as Emily Gavigan now credits Cahalan with saving her life.

“I’m just so thankful for her,” Emily Gavigan said on TODAY Wednesday. “If she hadn’t been here, than I probably wouldn’t be here.”

As Emily Gavigan languished in the hospital in 2010, her parents brought up Cahalan’s diagnosis with her doctors, but they didn’t see a connection, Bill Gavigan told TODAY. She was in critical condition. She couldn’t walk or talk and had developed a blood clot in her brain, her father recalled.

He remembered Cahalan’s story and begged the doctors to test his daughter for the same disease. “I said ‘Would you please test her for this,’” an emotional Bill Gavigan recalled on TODAY.

About hour later, after getting a positive result, Emily Gavigan was flown by helicopter to be treated by the same doctor who saved Cahalan’s life.

Sitting on either side of Bill Gavigan Wednesday morning on TODAY, the two women talked about what they now mean to each other.

Emily Gavigan has recovered and is now back in college, due to graduate next month. “I’m just 100 percent better,” she said. And she expressed gratitude to Cahalan.

“The way we can relate about what we’ve gone through too is really important to me,” Emily Gavigan said.

Cahalan, who wrote about her devastating illness in a new memoir titled, “Brain on Fire: My Month of Madness,” said she was open about her illness to help other people.

“She’s sitting here right now,” Cahalan said of Emily Gavigan. “I touched her life, in a way, and she’s touched mine. And that’s the reason you do something like this.”

Looking back at the time she was ill and seeing the photographs of herself in the hospital, Emily Gavigan said she sees somebody else.

“I look like a completely different person,” she said. “I feel like I’m watching someone else. I do remember some of it but most of it is just completely gone.”

The recovery wasn’t easy, her father noted, and he too, is thankful for Cahalan.

“It took a little bit of time for us to convince the doctors, but it’s thanks to Susannah that Emily sits here right now,” he said.

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Persistent Intrathecal Antibody Synthesis 15 Years After Recovering From Anti- N-methyl-D-aspartate Receptor Encephalitis.

Arch Neurol. 2012 Oct 15:1-3. doi: 10.1001/archneurol.2013.585. [Epub ahead of print]


BACKGROUND Anti- N-methyl-D-aspartate receptor (NMDAR) encephalitis is a severe autoimmune disorder characterized by high intrathecal antibody synthesis. Little is known about the long-term follow-up of the cerebrospinal fluid antibody status.

OBJECTIVE To describe persistent intrathecal antibody synthesis in a clinically healthy person 15 years after recovering from anti-NMDAR encephalitis.

DESIGN Case report.

SETTING Academic medical center.

PATIENT A 40-year-old woman who had been diagnosed as having encephalitis of unknown origin in 1995.

MAIN OUTCOME MEASURES Clinical evaluation and NMDAR antibody testing.

RESULTS On reexamination in 2011, the patient had fully recovered. Investigation of archived as well as follow-up serum and cerebrospinal fluid samples revealed intrathecal synthesis of NMDAR antibodies.

CONCLUSIONS This is the longest follow-up on a patient with anti-NMDAR encephalitis. Our findings emphasize that intrathecal antibody synthesis does not necessarily reflect disease activity and that the significance of NMDAR antibody titers needs to be interpreted for each patient according to the clinical context.

[PubMed – as supplied by publisher]

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