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Selected Highlighted News in the field of Autoimmune

Encephalitis January 2019 2nd edition

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In This Issue: IAES is currently accepting Art for Virtual Art Show in honor of World Encephalitis Day (WED) 2019, Highly recommended feature articles: Know the Red Flags for synaptic autoimmune psychosis (references new NEOS score), Clinical Reasoning Most popular article of the Month: Genetic link : HLA class II allele DRB1*16:02 is associated with anti-NMDAR encephalitis, Podcast: Radio Interview with Stuart Tomko, MD, a Washington University pediatric neurologist at St. Louis Children’s Hospital, discusses Autoimmune Encephalitis Clinician’s Corner: A score that predicts 1-year functional status in patients with anti-NMDA receptor encephalitis (NEOS score)

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International Autoimmune Encephalitis Society is holding A Virtual Art Show in recognition of World Encephalitis Day (WED) this February 22nd, 2019.

The IAES Virtual Art Show will showcase art of patients with autoimmune encephalitis, their family members, loved ones and Caregivers. Open to All ages.. Art should be representative of how Autoimmune Encephalitis has affected them.

All art mediums are welcome; pencil, coloring, painting, watercolor, fabric, clay, Photography, whatever medium the artist wants to use to express themselves.

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Highly Recommended Article this issue:  

Know the Red Flags for Synaptic Autoimmune Psychosis

Raising Awareness of AE in the Medical Community:

At a presentation January 15th, Dr. Dalmau, the world-renowned expert in Autoimmune Encephalitis, urged psychiatrists to become familiar with the red flags suggestive of synaptic autoimmunity as the underlying cause of first-episode, out-of-the-blue psychosis.

It’s important to have a high index of suspicion, because anti–NMDA receptor encephalitis is treatable with immunotherapy. And firm evidence shows that earlier recognition and treatment lead to improved outcomes. Also, the disorder is refractory to antipsychotics; indeed, antipsychotic agents make affected patients much worse, even to the point of developing something akin to neuroleptic malignant syndrome.

Manifestations of anti–NMDA receptor encephalitis follow a characteristic pattern, beginning with a prodromal flulike phase lasting several days to a week. This is followed by acute-onset bizarre behavioral changes, irritability, and psychosis with delusions and/or hallucinations, often progressing to catatonia. After 1-4 weeks of this, florid neurologic symptoms usually appear, including seizures, abnormal movements, autonomic dysregulation, and hypoventilation requiring prolonged ICU support for weeks to months. This is followed by a prolonged recovery phase lasting 5-24 months, and a period marked by deficits in executive function and working memory, impulsivity, and disinhibition. Impressively, the patient has no memory of the illness.

Dr. Dalmau and various collaborators continue to advance the understanding of this novel category of neuropsychiatric disease. They have developed a simple 5-point score, known as the NEOS score, that predicts 1-year functional status in patients with anti–NMDA receptor encephalitis. (Read about this research in Clinician’s Corner).

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Highly Recommended Article this issue:  

Clinical Reasoning: A middle-aged man with new onset seizures and myoclonic jerks

This case study came out January 15th and we want to bring it to your attention as it is very easy to read and takes the reader though the step by step evaluations done to arrive at a diagnosis. It is written for the RESIDENT & FELLOW SECTION. Each step the author asks: Questions for consideration.

Understand what doctors do when they are eliminating what the patient does not have and what they do have. What this suspect that needs to be eliminated (called a differential diagnosis).

This patient was diagnosed with extra limbic paraneoplastic autoimmune encephalitis secondary to underlying thymoma.

anti-GABAA receptor (GABAAR) was a weak positive.

*Those with GABAA receptor with be particularly interested in the discussion about that antibody.

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Most popular article of the Month:

HLA class II allele DRB1*16:02 is associated with anti-NMDAR encephalitis

Research just published out of China shows genetic link to anti-NMDAR encephalitis. This study for the first time demonstrates an association between specific HLA class II alleles, DRB1*16:02 in anti-NMDAR encephalitis, providing novel insights into the mechanism by which the disease occurs. This adds to LGI1 and CASPR2 HLA-DRB associations.  To read about other genetic predispositions that have been identified in AE, go to this location on our website.

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We highly recommend you take the time to listen to this valuable interview about Autoimmune Encephalitis. 

16 minute podcast Radio Interview with Stuart Tomko, MD, a Washington University pediatric neurologist at St. Louis Children’s Hospital, discusses Autoimmune Encephalitis. This is an easy to follow interview geared toward the layperson and allows the listener to receive a strong understanding of AE and education about how it is diagnosed and treated.

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Clinician’s Corner

A score that predicts 1-year functional status in patients with anti-NMDA receptor encephalitis


Just published- Open Access paper by experts on our Doctor’s list. This model was used to develop a 5-point prediction score, termed the anti-NMDAR Encephalitis One-Year Functional Status (NEOS) score. 382 patients with anti-NMDAr encephalitis and functional status at 1 year were studied. Factors associated with poor status (defined as modified Rankin Scale score ≥3) were identified. Conclusions The NEOS score accurately predicts 1-year functional status in patients with anti-NMDAR encephalitis. This score could help estimate the clinical course following diagnosis and may aid in identifying patients who could benefit from novel therapies.


Your donations are greatly appreciated. Every dollar raised allows us to raise awareness and personally help Patients, Families and Caregivers through their Journey with AE so that best outcomes may be reached. Your contribution to our mission will help save a life and improve the quality of lives for others.  Be a part of the solution by supporting IAES. 

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International Autoimmune Encephalitis Society (IAES) is a Family/Patient centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey.


Driven by the knowledge that “Education is Power”, International Autoimmune Encephalitis Society manages an educational support group for patients diagnosed with Autoimmune Encephalitis and their loved ones, empowering them to be strong self-advocates and advocates that will lead them to best outcomes and recovery. We are the premiere organization leading in these vital roles.  Raising awareness of Autoimmune Encephalitis across the many specialties of medicine that come in contact with these disorders and with the general public to ensure a timely and accurate diagnosis resulting in an aggressive treatment plan for best outcomes.

“Empowering victims of Autoimmune Encephalitis and their caregivers through Support and Education”.

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Our website is not a substitute for independent professional medical advice. Nothing contained on our website is intended to be used as medical advice. No content is intended to be used to diagnose, treat, cure or prevent any disease, nor should it be used for therapeutic purposes or as a substitute for your own health professional's advice. Although THE INTERNATIONAL AUTOIMMUNE ENCEPHALITIS SOCIETY  provides a great deal of information about AUTOIMMUNE ENCEPHALITIS, all content is provided for informational purposes only. The International Autoimmune Encephalitis Society  cannot provide medical advice.

International Autoimmune Encephalitis Society is a charitable non-profit 501(c)(3) organization founded in 2016 by Tabitha Andrews Orth, Gene Desotell and Anji Hogan-Fesler. Tax ID# 81-3752344. Donations raised directly supports research, patients, families and caregivers impacted by autoimmune encephalitis and to educating healthcare communities around the world. Financial statement will be made available upon request.

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