Misdiagnosed with schizophrenia for a year. Later on received the correct diagnosis of treatable brain inflammation - autoimmune encephalitis (Hashimoto’s Encephalitis) in April 2017. I am very happy that my story got posted in AE Alliance blog. I hope it will help some readers to receive a proper diagnosis. I cannot say that I recovered 100%, but there is improvement after IV steroids, and at least now I know the specific diagnosis. I’m sure that for many being told by doctors multiple diagnoses is a horrible experience. Going from one doctor to next, being told it’s schizophrenia, major depression, schizoaffective disorder… More doctors need to be aware of HE!
I had no idea that autoimmune encephalitis exists, so I didn’t know that I should test for it! I didn’t know anything about autoimmune disease or that I had it.
I just don’t understand why you would post it in a schizophrenia forum if you ultimately don’t have schizophrenia. Although it is informative. I would like to be checked out for this.
I posted here because this is where misdiagnosed individuals could be. Most people don’t know about the existence of autoimmune encephalitis, so they wouldn’t think of getting tested for it.
Some people do. There are different types of encephalitis, viral encephalitis, NMDAR encephalitis, Hashimoto’s Encephalitis. There is a good book My Brain on Fire by Susannah Cahalan. I didn’t hear voices, I sort of felt that I knew what people were saying to me even though they weren’t speaking. I though that old women on the street were telling me that they are being forced to live and were asking me to help them die.
It’s a rare disease but it is also underdiagnosed. Most people with autoimmune encephalitis are first usually treated with antipsychotics instead of immunosuppressants. There are people out there who have not been helped and were not tested for autoimmune disease. I think it’s important for more psychiatric patients to have antibody levels tested, to rule out autoimmune causes.
The only reason they know it’s underdiagnosed is because they have estimates like the ones I posted.
If people should have their antibody levels tested, then a good psychiatrist will do this at the appropriate time. Psychiatrists know about autoimmune disorders sometimes being misdiagnosed as schizophrenia. That doesn’t mean everyone with a schizophrenia diagnosis should be tested. I appreciate that you’re trying to help people, though. But let’s all just assume that most of the time, our doctors give us the tests and treatments that we need.