Diagnosis

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

If your clinician suspects AE, it is likely they will test for one of the antibodies that can cause AE. Various tests for autoimmune encephalitis are commercially available at Athena Diagnostics or Mayo Clinic. These test 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 are caused by other, still unknown antibodies, or by known antibodies for which a diagnostic test is not yet available.

In some AE cases an MRI test will show brain inflammation (encephalitis) and/or an EEG test will show generalized slowing or seizure activity in the brain. These two tests can rule out purely psychiatric causes of illness. For example, voltage-gated potassium channel complex encephalitis, another form of AE, can be recognized on MRI, as reported in a recent study by Kotsenas et al.

If you or a family member is diagnosed with autoimmune encephalitis, your doctor will discuss treatment options.

Learn about Treatment Options

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