Autoimmune Encephalitis, or simply AE, is a group of conditions where the immune system “attacks” healthy cells in the brain. This attack on the brain causes inflammation, known as encephalitis.
This inflammation is what causes the symptoms, however the symptoms vary greatly depending on which cells in the brain have been targeted. This is why one person AE may experience specific psychological symptoms, another may have heavy neurological impacts, and another could have a pretty even mixture of both.
AE affects roughly 5-10/100,000 people per year, which is not many! It is tricky to diagnose as it mimics many other conditions. Diagnosing this condition early is crucial to the recovery as the earlier it is diagnosed, the earlier treatment can stop the attack on the brain, therefore reducing symptoms.
+ New onset of nervous system dysfunction (such as — but not limited to — cognitive, memory, balance, coordination, vision, or hearing impairments)
+ New or exaggerated psychological disturbances (hallucinations, paranoia, anxiety, panic attacks)
+ Slow or slurred speech
+ Involuntary movements
+ Sleep disturbances
+ Decreased level of consciousness (from severe fatigue to unresponsiveness or catatonia)
+ Seizures, not explained by a pre-existing seizure disorder
+ Behavioral changes (such as agitation, confusion, compulsion)
+ Weakness or numbness in any part of the body
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+ Epileptologist (if seizures are involved)
+ Symptom-based therapies (occupational, physical, speech therapy)
+ Antibody titers
+ Inflammation markers
+ Steroids (“First Line” Treatment)
METHODS OF HEALING
As you get into the AE world, you’ll often hear “First Line” and “Second Line” treatments. First-line treatment consists of removing the trigger, which could be a variety of things from teratoma to infection. After the trigger is identified, first-line treatment will focus on suppressing the immune system, typically using steroids to help ease those attacks on the brain cells and removing the antibodies causing those attacks through processes known as IVIG and Plasmapheresis. For some, stopping the trigger is enough and they may only experience the first “phase” of first-line treatment, others may run through the whole gamut and still need a bit of help. This is where second-line treatments begin. Second-line treatments focus on targeting the immune system through stronger immunosuppressant medications and rehabilitation of lost skills, if needed.
Here are some great websites, authors, podcasts and other resources to help you navigate your Autoimmune Disease.
These are the women that have shared their autoimmune journey with us. Please take a moment to read some of their brave, honest and revealing stories about their diagnosis, successes, hardships and their lives.