Autoimmune Encephalitis – Some Resources

My sister, Ellen, sent me a link to a site I wasn’t aware of: The Autoimmune Encephalitis Alliance. Thanks, sister. All articles in the Resources at the end of the post are from the website so be sure to review them.

The site is an excellent resource for both patients and doctors dealing with this critical subject.

The monthly blog posts on the site are definitely  worth reading.

Here are some excerpts from the various pages of the site –


Autoimmune encephalitis (AE) can produce a very wide range of neuro-psychiatric symptoms. A major challenge in diagnosis is that different symptoms may appear at different times and different levels of intensity, so that the disease may mimic many other disorders. Some patients initially present with either neurological or psychiatric symptoms, further complicating diagnosis.

Symptoms associated with AE can include:

  • weakness or numbness of part of the body
  • loss of balance
  • slowed or blurred speech or loss of ability to speak
  • ataxia
  • involuntary movements
  • distorted vision
  • cognitive impairment
  • memory disturbance
  • decreased level of consciousness – to the point of unresponsiveness, catatonia or coma
  • seizures – (either self-evident, or smaller seizures that show up on an eeg reading)
  • partial or complete loss of appetite for long periods
    food and drink tasting inedible or triggering nausea
  • excessive eating without feeling sated
  • agitation
  • inability to sleep
  • loss of inhibition
  • rapid, pressured, or involuntary speech
  • hallucinations (visual or auditory) and delirium
  • paranoid thoughts
  • severe anxiety

An otherwise unexplained mixture of the above neuro-psychiatric symptoms may be a clue that the underlying cause is autoimmune encephalitis.

If you suspect autoimmune encephalitis, getting diagnosed and early treatment leads to the best outcomes.


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.


Early and aggressive treatment of AE leads to the best outcomes. A number of options are available to treat AE. These therapies are broken down into what are considered “first line” and “second line” treatment options. One or more “first line” treatments may be prescribed by your physician as soon as a patient is diagnosed with AE. The four most common “first line” treatments include the following:

  • removal of a teratoma (if present) that could be triggering the autoimmune response;
  • use of anti-inflammatory drugs (ie. steroids);
  • use of plasmapheresis to remove harmful antibodies from blood; and
  • treatment with intravenous immunoglobulin (IVIG) which is believed to occupy the binding sites where harmful antibodies attach to brain cells.

Early and aggressive therapy has been shown to prevent progression of the disease.

Patients who do not improve on first line treatments may be given a “second line” treatment. “Second line” treatments are drugs that are intended to suppress the immune system. The three most common “second line” drugs used for AE are:

  • Rituximab,
  • CellCept , and
  • Cytoxan (cyclophosphamide).


(1) A clinical approach to diagnosis of autoimmune encephalitis (Summary of the article below). [Full Text PDF]

(2) A clinical approach to diagnosis of autoimmune encephalitis [PubMed Abstract] [Full Text HTML] [Full Text PDF]. Lancet Neurol. 2016 Apr;15(4):391-404. doi: 10.1016/S1474-4422(15)00401-9. Epub 2016 Feb 20.

(3) Autoimmune encephalopathies [PubMed Abstract] Full Text HTML] [Full Text PDF]. Ann N Y Acad Sci. 2015 Mar; 1338(1): 94–114.
Published online 2014 Oct 14. doi: 10.1111/nyas.12553
PMCID: PMC4363225

(4) MRI findings in autoimmune voltage-gated potassium channel complex encephalitis with seizures: one potential etiology for mesial temporal sclerosis [PubMed Abstract] [Full Text HTML] [Full Text PDF]. AJNR Am J Neuroradiol. 2014 Jan;35(1):84-9. doi: 10.3174/ajnr.A3633. Epub 2013 Jul 18.

(5) Treatment and prognostic factors for long-term outcome in patients with anti-NMDA receptor encephalitis: an observational cohort study [PubMed Abstract] [Full Text HTML] [Full Text PDF]. Lancet Neurol. 2013 Feb;12(2):157-65. doi: 10.1016/S1474-4422(12)70310-1. Epub 2013 Jan 3.


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