Comment by cstaszak

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.