FINDING
an AE SPECIALIST
Finding a physician who specializes in AE may be one of the toughest hurdles (next to your insurance company) that you may encounter. A really knowledgeable and personable doctor who will listen is like finding a precious gem!
Places To Look
Teaching Hospitals (Just to name a few)
Mayo Clinic (US)
Weill Cornell Medical Center (US)
Columbia Presbyterian Medical Center (US)
Northwestern University Medical Center (US)
Cleveland Clinic (US)
University of Pennsylvania Center for Autoimmune Neurology (US)
Johns Hopkins Medical Center (US)
Massachusetts General Hospital (US)
Duke University & Autoimmune Brain Disease Clinic (US)
UCSF Multiple Sclerosis and Neuroinflammation Center (US)
Neurosciences Department of the Froedtert Hospital/Medical College of Wisconsin (US)
UT Southwestern and Children’s Health Dallas (US)
Womans and Brigham Hospital (US)
Boston Children's Hospital (US)
Neuro-Immunology Clinic at South Health Campus (Alberta, Canada)
Oxford University (UK)
Odense University Hospital (Denmark)
University of Regensburg Hospital/Department of Neurology (Germany)
Westmead Hospital (Australia)
Barrow (US)
Referrals from friends or support groups
Physicians Networks lists from noteable organizations such as:
AE Alliance Clinicians's Network
The Anti NMDA Receptor Encephalitis Foundation
Networking- if you are able to attend symposiums open to the public or "FACES" by Encephalitis Global you may meet others who can give you information.
Difficulty getting to your child's physician?
“Miracle Flights” provides free medical flights to specialized care and second opinions for children (More Info)
What Kind of Doctors Can Diagnose Autoimmune Encephalitis?
Since it is an autoimmune condition of the brain, most doctors knowledgeable
in diagnosing and autoimmune encephalitis are neurologists.
(Our hope is that one day every physician around the globe will be able to recognize AE/E)
However, other doctors are also very knowledgeable in diagnosing such as:
-
Neurologists
-
Rheumatologists
-
Psychiatrists, psychologists
-
Neuropsychiatrists
-
Immunologists
-
Family physicians and pediatricians
-
Emergency medicine
-
Infectious disease (in cases of viral or bacterial encephalitis which can lead to autoimmune encephalitis)
There are some hospitals that work "across the aisle" or "interdepartmental collaboration" where specialists in one area will work with specialists in other areas to diagnose or treat patients.
There are also doctors with "dual training" for example a doctor certified in both neurology and psychiatry, (there are other dual trained specialists as well). This can give the physician and edge in identifying whether a patient has a neurological or psyciatric condition.
Note: Rarely do endocrinologists diagnose AE, however there are some who can. It is widely assumed by patients that since the diagnosis is called "Hashimoto's Encephalopathy" therefore it can be identified by an endocrinologist who diagnose Hashimoto's thyroiditis.