Glad he had connections to get out of the psychiatric institution. Thinking of all the unfortunate people without the means being incarcerated there with their misdiagnosis, getting put down with antipsychotics

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burntsushi 3 hours ago | parent [-]

I'm very lucky to have had that connection. I didn't even know I had it until it was there. So I'm lucky on another level there too.

I was put on a low dose of an anti-psychotic. I am in fact still on it. We just haven't gotten to tapering off of it yet. (Other medications have taken higher priority.) Tapering off all of my medications, which is the goal, will take quite some time.

In the moment, I very much welcomed the anti-psychotic. I would do anything to fix what was wrong with me. The problem is that the front-line treatment for anti-NMDA receptor encephalitis (IVIG and steroids) takes a minute to kick in. Moreover, you don't have the diagnosis until later. There was a point in time, before the positive CSF antibody test but after the abnormal MRIs, where multiple sclerosis was a possible diagnosis.

In any case, once I got out of the psychiatric hospital and into Brigham and Women's, an MRI is indeed what I had right away. And that's when the brain lesion was found. But! Not all cases of anti-NMDA receptor encephalitis have an abnormal MRI. Susannah Cahalan, for example, had two normal MRIs. Brain inflammation was only detected indirectly at first because of the "clock test"[1]. And they later did a biopsy on her brain to confirm.

In retrospect, yes. I think I could have done a better job of advocating for myself on my first ER visit and demanded to see a neurologist. But I didn't know what I didn't know, unfortunately.

[1]: https://www.encephalitis.info/news/brain-on-fire-susannahs-r...

	▲	carlsborg 2 hours ago \| parent [-]
		Intriguing... "After months of misdiagnoses Dr Souhel Najjar, employs a test asking Susannah to draw a clock. Instead of the customary clock face, her condition led her to draw all the numbers 1 through 12 on the right side of the clock. This was the breakthrough moment; it was this clock drawing that enabled Dr Najjar to understand that the right side of Susannah’s brain was inflamed, further test revealed this inflammation was a result of anti-NMDA receptor encephalitis, initiating her path to recovery"