The psychosis and atypical psychosis (often while lucid) are indescribable horrors and you often have to accept that people can’t meet you there. At best, they can say “that’s fucking awful”, but understanding is impossible and not fair to expect from others. It’s been a hard journey to get to the point where I lead with me first and the pain, often physical and mental, last. I’m on maintenance IVIG now after a recent flare followed by aseptic meningitis.
Acceptance is hard, but I have renewed determination to live what life I can despite what I’m left with and always be open (but not desperate anymore) for ways to improve the carnage it left behind and that I carry every minute of every day. I wish you the absolute best.
Yeah. It’s hard to come out of it and explain to others aside from metaphors because no words come close. Your soul becomes corrupted and you have to figure out how to rebuild through pain and sequelae and acceptance. I’m still trying to figure life out over 1.5 years later, and I’m stuck with many, many challenges. But I’ve learned to do as much as I can, but give myself grace when it comes to not being the person I was before. Holding on to hope that stability, even if painful, will ultimately come. Even if stability means dark days, just not dark endless months. You are far from alone in that suffering and it’s hard to carry that scar that no one can see.
@burntsushi5 Yeah same time, I have my theory of the cause but nothing was definitive. T-cell mediated. And nope on the clinical trial although almost every doctor has asked me if they did lol, seems like a missed opp.
I had a testicular ultrasound as that’s usually where NMDAR encephalitis would stem from if it’s paraneoplastic. I did happen to have a tumor, but my identical twin with the same disease course did not, so it was removed but presumed not to be paraneoplastic.
Usually testicular germ cell tumors, mine was sertolli. With women (which it’s much more common in), it’s an ovarian teratoma. Both can cause the production of antibodies that attack the tumor but also attack the brain due to biological similarity.
This is the case for up to 20% of cases in men, up to half in women.
@burntsushi5 I see IVIG in your blog, my b. I’m sorry you have to go through something so dreadful. When your body attacks the very being of YOU… hard to even get across that level of suffering. I hope you make a full recovery and wish you well.