Comment by cstaszak
6 hours ago
Thank you for writing this. As a fellow traveler on the autoimmune encephalitis (AE) journey, it’s rare to see this condition mentioned outside a specialist neurology setting.
Three years ago, I was diagnosed with LGI1 autoimmune encephalitis (and yes, for those following along, AE comes in several varieties). While I never experienced the degree of psychiatric symptoms you unfortunately had to endure, I have a sense of what this disease can do and share a similar experience of testing and treatment.
For anyone unfamiliar with AE, imagine your immune system spontaneously deciding to run an ablation test on the live neural network inside your skull. Unsurprisingly, there may be some glitches.
My first symptoms were brief “twitches” that appeared simultaneously in my left arm and face. I later learned they were seizures. An urgent care physician prescribed a muscle relaxant and sent me on my way. Fortunately, I was persistent—and it helped immensely to have a supportive and equally persistent spouse. I was able to get in front of a neurologist quickly, and based on my symptoms she immediately suspected AE. By sheer luck, it was her area of expertise.
I was hospitalized immediately and underwent ten days of intensive treatment. That rapid diagnosis and intervention likely spared me a much more difficult recovery and outcome.
Today, life is mostly back to normal. I’ve been able to discontinue both anti-seizure medications and scheduled infusions. I still experience more physical and mental fatigue than I did before AE, and there are memory gaps around the time of my diagnosis. The disease also launched me into an ongoing cancer and B-cell surveillance journey. These days, I have to pace myself and consciously manage my energy in ways I never had to before.
Another challenge is living with the immunosuppression that resulted from treatment. Yes, I’m still the person masking up in our supposedly post-pandemic world.
For what it’s worth, I’ve found creatine helpful for mental focus and clarity (admittedly, a sample size of one).
Wishing you the very best, and I hope the CIELO trial delivers positive results for all of us.
These are the best comments. Hearing from someone else with AE is really wonderful. I've heard from only a few. And I'm really happy to hear about your mostly smooth recovery. I hope it continues!
> it’s rare to see this condition mentioned outside a specialist neurology setting
I only realized this from the Wikipedia article on anti-NMDA receptor encephalitis, but it's apparently what the main character (Will) suffered from in the Hannibal TV show. I watched that show and loved it. I had no idea about the specific disease he suffered from. If you had asked me before this, I probably would have said that he had something like bipolar, like Carrie in the TV show Homeland.
> imagine your immune system spontaneously deciding to run an ablation test on the live neural network inside your skull
This is brilliant. I'm totally going to steal this.
> Today, life is mostly back to normal.
This is heartwarming. I feel almost "normal" now. There are some lingering issues, but there's improvement. I hope it continues.
> My first symptoms were brief “twitches” that appeared simultaneously in my left arm and face. I later learned they were seizures.
This made me remember that I had some twitching too. I had two EEGs, but AFAIK, no evidence of seizures was found. Thank you for this, because it reminded me to write this down as a question to ask my doctors at my next follow-up.
> Wishing you the very best, and I hope the CIELO trial delivers positive results for all of us.
I'm feeling even more excited about being in the trial after the response from everyone! Especially those with AE.
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If you don't mind me asking, how long was it between when you first noticed symptoms and when you got treatment? And what treatment did you get? (The same as me? IVIG and IV steroids?)
I was extremely lucky and the gap between first physically detectable symptoms (faciobrachial dystonia (face), arm twitches) and initial treatment was only a week. My initial treatment was a hero dose of IV steroids (as you know to shut down the immune system) and plasmapheresis (filtering antibodies from my blood). I had a relapse ~5 months later, resulting in another (shorter) hospitalization where more steroids and IVIG came into the mix. I received Rituximab and IVIG infusions every six months for first two years. I was also on anti-seizure meds for most of this until cleared by an EEG. My infusion schedule is now being dictated by B-cell labs - they've been so low that I haven't needed any (yet). I've also been doing the periodic rounds with CT and other scans to make sure that if cancer is the cause of my AE, we can find it early and deal with it. Feel free to hit me up at my username at gmail if you'd like to talk further.