While the recovery process is unique to each patient, early and aggressive treatment for autoimmune encephalitis leads to the best recovery. The various antibodies causing the autoimmune response can result in varying symptoms and respond widely in terms of recovery. A study in Lancet Neurology by Dr. Titulaer, Dr. Dalmau and colleagues found that 50 percent of patients with Anti-NMDA-receptor encephalitis, the most-studied and best-understood type of Autoimmune Encephalitis, show improvement within four weeks of receiving treatment.
According to the same study, 80% of patients with Anti-NMDA-receptor encephalitis eventually have partial or complete recovery. Some patients took up to 18 months to recover. While Anti-NMDA is the most studied of the antibodies, the treatment for AE regardless of antibody, is generally similar. Unfortunately, science has yet to generalize recovery probabilities for the other known antibodies. In some cases the damage to the brain is irreversible.
Some patients have total recovery, including patients who are severely ill. For example, see the memoir by Susannah Cahalan, Brain on Fire: My Month of Madness. Other patients struggle for years to get the correct diagnosis and appropriate treatment. Helen and Daniel Egger’s blog Light of Sasha details their son’s ongoing journey with AE since 2009.
After recovery from an acute episode of autoimmune encephalitis, many patients have symptoms of traumatic brain injury (TBI). Symptoms of TBI can include, but are not limited to, fatigue, difficulty concentrating, acquired Attention Deficit Disorder (ADD), cognitive challenges, coordination problems, memory problems, lack of motivation, change of personality, irritability, and depression.
Aggressive treatment for TBI can substantially improve outcomes, especially in young people who have a great deal of brain plasticity. Doctors recommend that autoimmune encephalitis patients pursue TBI rehabilitation as appropriate after discharge from hospital.
If neurological symptoms persist, it may be a sign that the underlying disease process is continuing. Ongoing treatment with immunomodulation drugs on an outpatient basis may be recommended in these cases.
The Lancet Neurology article by Titulaer et al reported that 12% of anti-NMDA receptor encephalitis patients had at least one relapse within two years. No other studies have followed a sizable patient population to estimate relapse frequency.
Resources for AE are difficult to locate but we have attempted to share groups that hopefully will provide you additional information. Follow the link to get up-to-date resources for living with AE. You are not alone in this journey.