One of the major difficulties that many patients with AE face is that when the brain is affected, various symptoms present in different facets of human experience. These may include a person’s thoughts and behavior, emotions, speech, physical movements, memory, sleep habits, sensory experience, personality, etc. And these may even change from day to day as the illness progresses. Patients and families are confused about where to turn for help. The truth is that the complex manifestation of this disease ends up straddling many medical disciplines: neurology, psychiatry, rheumatology, immunology, endocrinology, psychology, and gynecology. The symptoms are all in one patient; but the medical field is split into specialties.
Due to frequent early psychiatric symptoms, one result has been that many adult patients with AE initially end up seeing psychiatrists first or are even hospitalized in a psychiatric ward for extended periods of time. This may unfortunately delay diagnosis and treatment. In an illness where better outcomes are tied to earlier immunotherapy, it is imperative that symptomatic red flags are brought to the attention of the treating physicians. Thankfully, this is a topic more frequently mentioned in the medical literature. For example, in “Red Flags: Clinical Signs for Identifying Autoimmune Encephalitis in Psychiatric Patients,” published in Frontiers in Psychiatry in Feb. 2017, it is noted that “red flags” often exist that may be used to recognize patients suffering from autoimmune encephalitis earlier, thus leading to prompt immunotherapy. They state that “the threshold for CSF analysis and autoantibody testing should be low” when red or yellow flags are present. At the top of the list, these include seizures, catatonia, autonomic instability, or hyperkinesia. They also identified “yellow flags” that should heighten suspicion for a neurological disease process including decreased consciousness, abnormal postures or movements, autonomic instability, focal neurological deficits, aphasia, dysarthria, rapid progression of psychosis despite therapy, hyponatremia, catatonia, headache, or other autoimmune diseases. The authors contend that using these criteria to prompt further testing will continue to shorten the time to accurate diagnosis for AE patients. To read the full article, click here.
Post by Lynn Chapman