A quick diagnosis allows for early and aggressive treatment, improving the opportunity for quick and full recovery.

Autoimmune encephalitis (AE) is a complex disease that often requires collaboration among multiple medical disciplines for effective diagnosis and treatment. Most AE patients can expect to see a team of doctors that may include neurologists, rheumatologists, psychiatrists, immunologists and others.

Finding a Doctor

The AE Clinicians Network contains contact information for doctors and researchers from around the world who have self-identified has have experience treating autoimmune encephalitis. The network was developed and is maintained by the AE Alliance.

Visit the AE Clinicians Network to find a doctor near you. If you know an AE doctor who is not on the list, encourage them to submit their clinic’s information. [NOTE: we ask that only doctors to submit their own information.]

Testing for AE

In patients whose presentation are consistent with that of autoimmune encephalitis, testing typically used to aid in the diagnosis of AE includes MRI of the brain with contrast, electroencephalogram (EEG), blood and cerebrospinal fluid analysis for markers of inflammation. Your doctors may specifically look for antibodies which targets the immune system to attack the brain causing encephalitis. These antibodies may be found both in the blood and cerebrospinal fluid, so testing both is necessary in most cases. Experts in the field have developed diagnostic criteria to aid in the diagnosis of AE which takes into consideration these tests. Various antibody tests for autoimmune encephalitis are commercially available at Athena Diagnostics or Mayo Clinic. The above mentioned tests should be ordered quickly by your doctor if AE is suspected.

However, negative test results for autoimmune antibodies does not rule out AE. A significant percentage of AE cases maybe caused by other, still unknown antibodies, or by known antibodies for which a diagnostic test is not yet available. As such, specific diagnostic criteria for “antibody negative” autoimmune encephalitis has been defined. It is very important that in cases who do not fulfill the proposed diagnostic criteria, to remain open to the possibilities of other alternative diagnoses.

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