Who ACTUALLY treats autoimmune encephalitis? | Part 1: My experience with doctor shopping, a psychiatrist, and a dozen neurologists

Question: Who treats autoimmune encephalitis (AE)?

The traditional answer: neurologists.

The jaded answer: no one does.

The real answer: a haphazard smattering of medical professionals who balance their knowledge of medical literature with sound clinical judgement and the needs of the patient.

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What happens when your autoimmune encephalitis treatments aren’t working?

While being diagnosed with autoimmune encephalitis (AE) in the first place is scary, failing treatments that normally give people their lives back is despairing. Recognition of the failure is slow. You’re told to hang tight and be patient for the immune system to adjust; but as months pass by without sustained improvements, the feeling that something is wrong begins to take hold.

The information on this site, such as text, graphics, images, and videos, is designed to provide a patient perspective on understanding and living with a long-lasting illness. It is for general informational and entertainment purposes only, and does not serve as a substitute for consulting with your own healthcare professionals or conducting your own research. It is not intended to serve as medical advice, or to be used to diagnose, treat, cure, or prevent any disease. While every effort is made to provide accurate information on the subjects discussed, no responsibility is assumed for any errors or omissions in the content. Always seek the advice of a qualified healthcare professional to assess and guide your medical care.

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