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Selected Highlighted News in the field of Autoimmune

Encephalitis  AUGUST 2018 1st edition

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This issue includes ~ Researchers have created a simple diagnostic test for anti-NMDAr encephalitis that can be done on site at hospitals. Learn about the value of an FDG-Pet Scan for diagnosis of AE and confirmation of recovery.  Specific Movement Disorder in anti-NMDAr encephalitis has been proven leading to a  marker of clinical diagnosis and ruling out primary psychiatric disorders. 

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Researchers at the

Lankenau Institute for Medical Research (LMR)

have created a new diagnostic test for Autoimmune Encephalitis

These researchers were first authors on two recently published studies describing this work. The first study,Monoclonal antibodies from a patient with anti‐NMDA receptor encephalitis, was featured in July’s issue of THE HERD.  “Our discovery will help doctors to more easily identify patients who have this treatable neurological and psychiatric disease,” said Dr. Dessain.  Until now, the only currently available diagnostic test cannot be performed in most clinical laboratories and needs to be sent out to other labs such as Mayo Clinic, MN in the U.S.A. or Oxford in the U.K. for example. To address this issue, Dr. Dessain and his team created a simple ANRE assay that can be adapted for use with common clinical laboratory techniques. Their results were published recently in a companion research study entitled: Membrane-bound and soluble forms of an NMDA receptor extracellular domain retain epitopes targeted in auto-immune encephalitis  


Why is the FDG-Pet scan important?

 The FDG-Pet can tell us if the disease is active, or if the disease is not active and you are in recovery.  When you have a second FDG-Pet and compare that to the first one, you can see how the treatments the patient has had has helped to improve the patient’s health by controlling the progression of the disease or if the disease has advanced.  This is a firm guide to the clinician as to what further treatment is needed.   Not all hospitals have and FDG-Pet machine.   Mayo Clinic Rochester does them routinely with AE patients.   In the U.S.A., insurance will frequently deny the prior authorization making it difficult to get one outside of an AE clinic.   This video explains what the FDG-pet does

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Diagnostic Value of 18F-FDG PET/CT Versus MRI in the

Setting of Antibody-Specific Autoimmune Encephalitis

We would like to return to  this study from 2017.  As our readership grows, it is important to be aware of key tests that can assist in diagnosis and recovery. 

  This study found that brain 18F-FDG PET/CT was much more likely to be abnormal than MRI of the brain. 56.5% (13/23) patients with abnormal 18F-FDG PET/CT results had no abnormal finding on MRI, suggesting the limited sensitivity of MRI in AE.

This study suggests that 18F-FDG PET/CT imaging may serve as an early biomarker to capture more patients in the initial clinical evaluation process of AE. Due to the prolonged time for autoantibody test results to return and the possibility of a commercial autoantibody assay being normal with no autoantibody detected, immunotherapy must often be instituted on the basis of clinical presentation and para-clinical findings available in the interim. This has prompted investigation into biomarkers that may further aid in the early diagnosis of AE for patients with and without an identified antibody.


results in this small group of antibody-positive AE patients show a much greater sensitivity for detection of an underlying abnormality with 18F-FDG PET/CT than with MRI. Because early intervention is paramount to optimal clinical outcome, our results suggest that 18F-FDG PET/CT of the brain be added to the clinical workup of patients with suspected AE, particularly in those with normal or nonspecific MRI findings. 

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Clinically, researchers have always felt the NMDAR-antibody movement disorder looked distinctive. It has now been proven. Which will assist in a faster diagnosis and ruling out primary psychiatric disorders, childhood metabolic disturbances and drug intoxication

In this study, ratings from seven experts across 76 videos were used to better define the movement disorder (MD) in NMDAR-Encephalitis.  

The Movement Disorder (MD) is a common and well-emphasized feature of disease descriptions, yet until now lacked an expert-based gold-standard description.  1–5 From this study, the MD was an early and persistent feature and, from a large collection of videos, it was characterized by diverse, widely distributed hyperkinetic phenomenologies, with prominent dystonia, chorea and stereotypies, with almost complete absence of tremor and tics and a relative paucity of myoclonus. Furthermore, it was complex to describe using conventional MD terminology, yet the above features may help differentiate this mixed movement disorder from important differential diagnoses in routine clinical practice including primary psychiatric disorders, childhood metabolic disturbances and drug intoxication. Indeed, the coexistence of widely distributed chorea, dystonia and stereotypies is rare in other neurological conditions  and may reflect the targeted autoantibody-mediated downregulation of NMDARs.

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”, Int’l AE Society manages an educational support group for patients diagnosed with Autoimmune Encephalitis and their loved ones on Face Book, 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.

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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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