Understanding Autoimmune Encephalitis
Autoimmune encephalitis can be life changing. The symptoms may be hard to cope with. Recovery can also take time, sometimes months to a year. It can help to take an active role in your care.
The information below will help you better understand autoimmune encephalitis. Understanding more about this health problem can help you make the best choices about the care you may need. If you have any questions or concerns, talk with a doctor. They are here to help.
What is autoimmune encephalitis?
Autoimmune encephalitis is a condition that affects the brain. It occurs when the immune system starts to attack healthy brain cells. This faulty response causes inflammation in the brain. Without treatment, brain damage can occur.
What causes autoimmune encephalitis?
The cause of autoimmune encephalitis may not be known. Sometimes, an infection or cancer may set off the immune response. In some people, the condition may be genetic. As a result, they are more likely to get it.
What are the symptoms of autoimmune encephalitis?
The symptoms of autoimmune encephalitis vary from person to person. At first, they may be flu-like, such as a headache or fever. Then, over a few weeks to months, more concerning symptoms start. These may get better for a while but then get worse.
Symptoms of autoimmune encephalitis may include:
Behavior changes, like agitation, anger, or depression
Confusion
Delusions or hallucinations
Loss of balance or coordination
Memory loss
Movement problems
Problems thinking or speaking
Seizures
Trouble sleeping
Vision problems
How is autoimmune encephalitis diagnosed?
Autoimmune encephalitis can be hard to diagnose. Early on, its symptoms may look like other health problems, such as epilepsy or schizophrenia. To help with the diagnosis, a doctor will do a physical exam. They will also ask about symptoms and past health.
These tests may also be done:
Blood draw. This test can help rule out other health problems, such as an infection or other illness.
Brain MRI scan. This imaging test may show inflammation or abnormalities in the brain.
Electroencephalography. This test checks the electrical activity in the brain. It can help rule out a seizure disorder.
Lumbar puncture. This test checks the fluid around the brain and spinal cord. This fluid is called cerebrospinal fluid (CSF). During the test, the lower back is numbed. Then a doctor inserts a needle to take some CSF out. The CSF is checked in a lab for certain antibodies. Some antibodies can be a sign of autoimmune encephalitis. But not everyone with the condition has antibodies in their CSF.
Screenings for cancer. In some cases, cancer can cause autoimmune encephalitis. Finding a tumor early can help with treatment.
How is autoimmune encephalitis treated?
A doctor will talk with you about treatment options. They will depend on things like age, overall health, and personal preferences. Together, you and the doctor can choose the best treatment.
A key part of treatment is reducing inflammation in the brain. Doing so helps prevent brain damage. To save brain cells, treatment may be started before a firm diagnosis has been made.
Treatment may include one or more of the following:
Medicines. The first treatment used to reduce inflammation in the brain is often steroids. These may be taken by mouth or given through an intravenous line (IV). If steroids aren't effective enough, other medicines may be used. These include rituximab and cyclophosphamide.
Intravenous immunoglobulin. This treatment is given through an IV. It is a blood product that helps regulate the immune system.
Plasmapheresis or therapeutic plasma exchange. This procedure is like a blood transfusion. During it, blood is taken through an IV. The plasma is removed from the blood. It’s then replaced with donor plasma or a substitute. Plasma is the liquid part of blood. It helps carry blood cells and other substances throughout the body. With autoimmune encephalitis, plasma contains the antibodies that may set off symptoms. This treatment replaces those antibodies.
Other medicines. Your doctor may give you other medicines to ease symptoms like seizures, anxiety, or trouble sleeping.
Physical, occupational, and speech therapy. These treatments can help with recovery. They can help manage problems with moving, speaking, or doing daily activities.
Surgery. If the condition is caused by cancer, surgery may be done to remove the tumor.
What are the complications of autoimmune encephalitis?
This condition may lead to other health problems, such as:
Brain damage
Stroke
Death
What can you do to feel better?
Autoimmune encephalitis can be life changing. The symptoms may be hard to cope with. Recovery can also take time, sometimes months to a year. It can help to take an active role in your care:
Work closely with your doctors. They are here to support you in treatment decisions. Keep in mind, you may need to change treatment if the condition isn’t getting better.
Keep all appointments. You may need imaging tests every few months. If the condition was caused by cancer, you may also need regular screenings.
Consider a clinical trial. Studies are underway on other treatments. Talk with your doctor to see if any may be an option for you.
When to call 911
Call 911 right away if these symptoms occur:
Trouble breathing
Chest pain
When to contact your doctor
Reach out to your doctor or get medical care right away if these occur:
Fever of 100.4°F (38°C) or higher, or as directed by your doctor
Symptoms that don’t get better or get worse
New symptoms