“Somewhere, something incredible is waiting to be known.”—Sharon Begley.

I finally had a decent primary care doctor even though we were both at a loss at what to do next. But then he had an idea, there was a psychiatric clinic practicing medicine with a bit of twist, the Amen Clinic.

So he sent me there.

One thing they had me to do was my scan my brain with SPECT. By now, I had a good working theory of what everything in this blog is about, it’s about one disease. That is, the weird GI infection of 1995 was actually an encephalitis, not a gastroenteritis, and it was the culprit in pretty much every symptom I have had over these last three decades. 

So I surmised that the site of the disease was located where the vagus nerves originate in the brain, namely the solitary nucleus for the sensory component and the dorsal motor nucleus for the motor component. 

I asked my psychiatrist whether the SPECT might show anything, but he didn’t think it scanned that far down.

However, when we got the results, it turns out these areas are in the scan and they were majorly abnormal! Specially, the radiologist called it a “hot” brain stem.

In light of Dr. Schuster’s recognizing my condition as a novel disease, it is only fitting it be named after him. So feel free to refer to my disease as Schuster’s disease. Even though I am the only person to ever have it, perhaps one day, the ICD will include it. They can’t say it doesn’t have a name.