Diagnósticos
An autoimmune epilepsy diagnosis begins with a physical exam and a review of your symptoms.
Testings for autoimmune epilepsy includes lab tests, brain imaging and testing the electrical activity in the brain.
Lab tests
Lab tests check for antibodies in the immune system that are attacking brain cells and causing seizures.
Healthcare professionals test for antibodies by testing your blood or the fluid that surrounds your brain and spinal cord, known as cerebrospinal fluid. Cerebrospinal fluid is removed during a procedure known as a lumbar puncture. A healthcare professional numbs the lower back and uses a hollow needle to remove fluid for testing.
For some people with autoimmune epilepsy, these tests don't find antibodies.
Brain imaging
An MRI of your brain can look for signs of autoimmune epilepsy. You also may have a brain imaging test known as a fluorodeoxyglucose (FDG) PET scan. This test checks how well nutrients are being metabolized in the brain. This can offer clues about whether you have certain types of autoimmune encephalitis that may be causing seizures. Brain imaging also can rule out other possible causes of your seizures.
EEG
An electroencephalogram is a test that measures electrical activity in the brain. This test also is called an EEG. It may show seizure activity and can help diagnose autoimmune epilepsy. An EEG also can help rule out other conditions. Your healthcare professional may record seizure activity using a video EEG.
Tratamientos
Autoimmune epilepsy treatment differs from the treatment used for other types of epilepsy. Healthcare professionals use immunotherapy to reduce the immune system activity and treat seizures.
If cancer is the cause of autoimmune epilepsy, treating the cancer is an important part of treatment.
Immunotherapy
Immunotherapy medicines for autoimmune epilepsy may include:
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High-dose corticosteroids. Your healthcare professional may treat you with methylprednisolone (Solu-Medrol) through an IV in your arm for up to five days. After this period, you may take methylprednisolone by IV regularly for weeks, gradually lengthening the time in between doses.
Or you may take the steroid medicine prednisone orally. You take a high dose for up to five days, then a lower dose for several weeks. Over time, the dose of the oral medicine is lowered slowly. This is known as tapering.
- Immunoglobulin. This medicine is taken through an IV in the arm for up to five days. Then you take lower doses of the medicine regularly for several weeks.
Depending on your response to the initial treatments, your healthcare professional also may recommend longer acting medicines that work on the immune system. These may include rituximab (Rituxan, Truxima, others), cyclophosphamide, mycophenolate (Cellcept, Myhibbin), azathioprine (Azasan, Imuran), or tocilizumab (Actemra, Tofidence, Tyenne).
Plasma exchange
Your healthcare professional also may recommend plasma exchange. A healthcare professional removes the liquid part of your blood and separates it from your blood cells. Then the blood cells are put back into your body and your body makes more plasma. This therapy helps remove the antibodies that are causing the immune system to attack brain cells.
Antiseizure medicines
Although antiseizure medicines don't work as well in people with autoimmune epilepsy, they may still play a role in your treatment. However, the effectiveness of these medicines may be limited. If you take immunotherapy and become seizure free, your healthcare professional may suggest slowly reducing your dose of antiseizure medicines over several months to see if seizures return.
Many people whose seizures are due to autoimmune encephalitis become seizure free after taking immunotherapy. It may take several months after the treatment for the seizures to stop. But seizures continue for some people even after immunotherapy. People with GAD65 antibodies are less likely to become seizure free.
If you have symptoms other than seizures, such as trouble with memory or speech, you may need rehabilitation. Occupational and speech therapy can help.
Surgeries
Rasmussen syndrome, which mainly affects children, usually doesn't respond to medicines. Brain surgery often is needed to treat this type of autoimmune epilepsy.
Preparación para la consulta
If your symptoms are serious, you might need emergency medical care.
If your symptoms are less serious, you may start by seeing your healthcare professional. Or you may be referred right away to a doctor who specializes in nervous system conditions, known as a neurologist.
What you can do
When you make the appointment, ask if there's anything you need to do in advance, such as fasting before having a specific test. Make a list of:
- Your symptoms, including any that seem unrelated to the reason for your appointment.
- Key personal information, including major stresses, recent life changes and family medical history.
- All medicines, vitamins or other supplements you take, including the doses.
- Questions to ask your healthcare professional.
Take a family member or friend along, if possible, to help you remember the information you're given.
For autoimmune epilepsy, some basic questions to ask include:
- What's likely causing my symptoms?
- Other than the most likely cause, what are other possible causes for my symptoms?
- What tests do I need?
- Is my condition likely short term or lasting?
- What's the best course of action?
- What are the alternatives to the primary approach you're suggesting?
- I have these other health conditions. How can I best manage them together?
- Are there restrictions I need to follow?
- Should I see a specialist?
- Are there brochures or other printed material I can have? What websites do you recommend?
Don't hesitate to ask other questions.
What to expect from your doctor
Your healthcare professional is likely to ask you several questions, such as:
- When did your symptoms begin?
- Do your symptoms occur all the time or off and on?
- How bad are your symptoms?
- What, if anything, seems to improve your symptoms?
- What, if anything, appears to worsen your symptoms?
Dec. 21, 2024