In my case, the misdiagnosis up front was entirely reasonable. (EDIT: Well, maybe not. See below.) The generalized anxiety disorder diagnosis from my PCP made a lot of sense given what was happening. I hadn't had delusions yet at that point. It was... a mixture of panic attacks, night sweats, jaw pain and a greatly increased level of anxiety compared to my baseline.
My PCP did run a bevy of tests (chest x-ray, and took tons of blood) to try and rule out anything biological.
Given what was known at the time, I think my PCP did the right thing. And when my symptoms really escalated (delusions, suicidal ideation, falling and hitting my head), my PCP suggested going to an ER. And that's what we did.
I think it was the ER that really dropped the ball. Given the sudden onset of everything, the fact that they didn't get me in front of a neurologist is, in retrospect, really quite baffling. That's when I went to a psychiatric hospital, where I spent 3 nights.
I only got out of that hospital due to total luck. My neighbor was old college buddies with a neurosurgeon. (We had no idea about it. It just came up randomly when my neighbor was dropping my son off at home for us.) That was the critical connection because he ended up talking to the neurology department at Brigham and Women's, then talked to the psychiatric hospital and was the one who facilitated my transfer.
My wife tried to do it on her own but they wouldn't allow it because I had been medically cleared. She had to give 3 days notice to pull me out. Or otherwise, by default, I would see a neurologist after 2 weeks. According to the psychiatric facility.
I really don't know if I would have made it that long. The encephalitis wouldn't have killed me in that span of time, but I was in an extremely dark place.
I'm also really lucky that this is an autoimmune disorder that has a pretty objective diagnostic criteria: a positive antibody test in your cerebral spinal fluid. You "just: need to have your spine tapped to get that though. Fun times.
I actually haven't been able to get the ED notes from that first ER visit yet. They are in a different system than Brigham and Women's, which made it super easy to read notes in their app.
So you have had a life changing experience. I am really sorry for all the pain and fear this has caused you and your family. Iv ig is a miracle for autoimmune trainwrecks. It saved one of my loved ones lives too. I am so glad you are still here with us.
I know nothing about your recent reality. I can tell you this. Psychosis, immense fear, and near death experiences aren't something to brush off. Perhaps best not dwelled on, but I hope you either stay in therapy or begin therapy with someone who understands trauma. Not to discuss it as trauma, but to keep tabs.
You may be good to work! Good to be a kick ass dad! But if there are things you haven't dealt with here they may rear their head at a random inconvenient time down the road. Maybe you are all good, I bet you are. But please remember to take care of your mind.
Wishing you and your family the best. Stay well!
Be well mate.