The recovery process is unique to each patient. Early and aggressive treatment leads to the best recovery. A recent study in Lancet Neurology by Dr. Titulaer, Dr. Dalmau and colleagues found that 50% of autoimmune encephalitis (AE) patients show substantial improvement within four weeks of receiving treatment.
According to the same study, patients continue to improve after being discharged from the hospital. Over 80% of patients with autoimmune encephalitis eventually have partial or complete recovery. However, on average, autoimmune encephalitis patients took up to 14 months for complete recovery.
Many 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 adolescent’s journey with AE.
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.