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Initially considered very rare, the disease is now increasingly recognized as a signicant diagnosis in the spectrum
of brain illnesses related to malfunctions of the immune system. These types of disorders may be much more
common than previously thought.
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Psychiatrists specialize in the diagnosis and treatment of mental disorders and are key to ruling out neurological
causes of psychiatric symptoms.
Neurologists specialize in the diagnosis and treatment of diseases involving the nervous system, which includes
the brain, spinal cord, and bodys network of nerves.
Rheumatologists specialize in the diagnosis and treatment of clinical problems that affect the joints and soft tissue.
Since many of the diseases rheumatologists treat are immune system related, they are often included under the
banner of immunology.
Immunologists specialize in the diagnosis and treatment of problems with the immune system, including
immunodeciency, when the immune system is compromised or impaired, and autoimmunity, when the immune
system attacks its own body.
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In 2016, a Lancet Neurology article by Dalmau et al provides the rst broadly accepted diagnostic criteria for
autoimmune encephalitis. The article was followed by a precis that provides a series of panels for use in diagnosing
AE. Among the key ndings of the new criteria:
Read the AE Alliance blog post on precis for more information. Consider sharing both the article and the precis
with your medical team if they have not read these articles.
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A teratoma or cancer is found only in a small minority of AE patients. Active infection is also uncommon in patients
presenting with AE. Unfortunately, the immediate trigger of many episodes of AE remains unknown.
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What kind of outcomes can we expect from this disease? How long does it take to get
better?
More research is needed on recovery and outcomes associated with AE. One study from 2013 provides the best
data.
The 2013 Lancet Neurology article reviewed the study of 577 patients with AE reported that 53% of patients who
received immunomodulation therapy showed improvement within 4 weeks. 81% of patients showed substantial
or complete recovery. On average, patients continued to improve for 14 months after onset of acute AE. 12% of
patients who recovered from a rst acute episode had at least one relapse in the next two years. Overall mortality
associated with the disease was approximately 6%. [Note that this study is limited to one type of AE anti-NMDA-
receptor antibody encephalitis].
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At least fteen different types of autoimmune encephalitis have been identied in the laboratory. Several
commercial labs provide diagnostic tests for AE including Mayo Labs, Euroimmun and Athena Diagnostics.
See How do clinicians currently recognize and establish a diagnosis of AE? above for links to diagnostic criteria
for AE.
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1. removal of a teratoma (if present) that could be triggering the autoimmune response
2. steroids to reduce immune response and inammation
3. plasmapheresis to remove harmful antibodies from blood
4. intravenous immunoglobulin (IVIG), which is believed to occupy the binding sites where harmful antibodies
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attach to brain cells.
1. Rituximab
2. CellCept
3. Cytoxan (cyclophosphamide)
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What other medications are commonly prescribed to patients with AE? Are there any
medications that specically should not be taken by someone suffering from AE?
For treatment of symptoms in particular agitation and sleeplessness benzodiazepines are commonly
prescribed. High-dose Lorazepam (trademark: Ativan) can be highly effective for AE patients.
Note that because of the completely different disease mechanism, use of anti-psychotic drugs commonly used to
treat bipolar disorder and schizophrenia such as Clozapine (Clozaril) and Risperidone (Risperidal) may not be
effective, and according to some clinicians may actually increase the severity of AE symptoms.
Failure to respond to anti-psychotics may be a diagnostic clue that the actual cause of psychosis may be
autoimmune encephalitis.
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What social services are available for children (in the U.S.) who have AE?
School age children are entitled to accommodations under U.S. law, and may qualify for an Individualized
Education Program (IEP) for acquired cognitive problems and/or ADD. Both the National Center for Learning
Disabilities and the National Dissemination Center for Children with Disabilities provide useful information on
IEPs and other resources.
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My doctor says my family member does not have AE. Should I get a second opinion?
It is critical that you feel that your medical provider is addressing all of your medical concerns. If you feel you
arent being heard, we highly recommend getting a second opinion. You are your best advocate.
If you are looking for a second opinion, you can access the AE Clinicians Network here. The network is a list of self-
identied AE experts.
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Please visit our contact page to connect with the AE Alliance and join our mailing list.
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2016 Autoimmune Encephalitis Alliance, Inc. AE Alliance is a North Carolina charitable foundation and a registered 501(c)(3) organization.