I was recently diagnosed with anti-NMDA receptor encephalitis
I was recently diagnosed with anti-NMDA receptor encephalitis
我最近被诊断出患有抗NMDA受体脑炎
I was recently diagnosed with anti-NMDA receptor encephalitis. It is an autoimmune disorder where your body’s normally helpful antibodies start acting strangely. This leads to inflammation in the brain. This short blog briefly discusses some of my experience and prognosis. Target audience: Anyone relying on my work for their own projects. 我最近被诊断出患有抗NMDA受体脑炎。这是一种自身免疫性疾病，你体内原本有益的抗体开始出现异常，导致大脑发炎。这篇简短的博客简要讨论了我的部分经历和预后情况。目标读者：任何依赖我的工作进行项目的人。
It all started with flu-like symptoms: heart racing, night sweats, the chills and trouble sleeping. But no congestion or cough. I also felt really off mentally. A deep sort of anxiety, along with panic attacks, that I had never experienced before in my 38 years of life. It was terrifying, especially because I had no idea what was causing it. There were no life events or obvious triggers that precipitated the psychological symptoms, nor was there any obvious biological explanation for the physical symptoms at the time. 一切始于类似流感的症状：心跳加速、盗汗、发冷和睡眠困难，但没有鼻塞或咳嗽。我的精神状态也感觉非常不对劲。那是一种深层的焦虑，伴随着恐慌发作，这是我 38 年人生中从未经历过的。这非常可怕，尤其是因为我根本不知道是什么原因造成的。当时没有任何生活事件或明显的诱因导致这些心理症状，也没有明显的生物学解释来解释这些身体症状。
This was only the beginning. Over the ensuing weeks my physical symptoms progressed to chronic jaw pain, making it incredibly difficult to eat. I also had problems with my balance. As someone who has easily juggled 3 balls and played sports for my entire childhood, I couldn’t catch a ball lobbed to me from a few feet away by my 5 year old son. My psychological symptoms were perhaps even more horrifying to me. I had suicidal ideation and suffered from psychosis. Specifically, delusions and auditory hallucinations. 这仅仅是个开始。在接下来的几周里，我的身体症状发展为慢性下颌疼痛，导致进食极其困难。我的平衡能力也出现了问题。作为一个从小就能轻松玩转三个球并参与各种运动的人，我竟然接不住我 5 岁儿子从几英尺外抛给我的球。我的心理症状对我来说或许更可怕。我出现了自杀念头，并患上了精神病，具体表现为妄想和幻听。
The problems with balance and the overwhelming nature of my psychological symptoms eventually led me to fall and hit my head. This in turn led myself and my wife to decide that I couldn’t be safe at home. And that brought us to my first emergency room visit. They cleared me physically and sent me to an in-patient psychiatric hospital, which, at the time, I welcomed because my symptoms had progressed beyond what we could manage at home. 平衡问题和难以承受的心理症状最终导致我摔倒并撞到了头。这促使我和妻子决定，我在家已不再安全。这让我们第一次去了急诊室。医生排除了我的身体疾病，并将我送往住院精神病院。当时我对此表示欢迎，因为我的症状已经超出了我们在家所能处理的范围。
It is common for anti-NMDA receptor encephalitis to be misdiagnosed as (in my case) generalized anxiety disorder or schizophrenia. Since I had been cleared physically, getting out of the psychiatric hospital quickly to see a neurologist proved difficult. This was the single point, in retrospect, where our health care system let me down. It took a lucky connection with someone who happened to be a doctor to get me out of the psychiatric facility and into the neurology department at Brigham and Women’s Hospital in Boston. 抗NMDA受体脑炎常被误诊为（就我而言）广泛性焦虑症或精神分裂症。由于我的身体检查结果显示正常，想要快速离开精神病院去看神经科医生变得非常困难。回想起来，这是我们的医疗体系让我失望的唯一一点。多亏了一位恰好是医生的熟人帮忙，我才得以离开精神病院，转入波士顿布里格姆妇女医院的神经科。
After that, I was in and out of Brigham and Women’s Hospital for almost a month. I had several MRIs, a lumbar puncture, EEGs and many more tests. As a result of what I now see as a life saving treatment protocol, I very quickly received intravenous immunoglobulin (IVIG) and methylprednisolone, even before my diagnosis was known. In particular, MRIs revealed a lesion in my brain. However, confirming a diagnosis of anti-NMDA receptor encephalitis would come later since it is best done with at least a positive antibody test in your cerebral spinal fluid. Results from this specific test typically take a couple weeks to come back. 此后，我在布里格姆妇女医院进进出出近一个月。我做了几次核磁共振（MRI）、腰椎穿刺、脑电图（EEG）以及许多其他检查。由于接受了现在看来是挽救生命的治疗方案，我在确诊之前就很快接受了静脉注射免疫球蛋白（IVIG）和甲泼尼龙治疗。特别是核磁共振显示我的大脑有病变。然而，确诊抗NMDA受体脑炎还需要时间，因为最好至少要有脑脊液抗体检测呈阳性的结果。这项特定检测的结果通常需要几周时间才能出来。
By the time I received my official diagnosis, the IVIG and steroids had kicked in and I was feeling much better, albeit, not nearly at 100%. I’ve since continued on a course of steroids that I am now already tapering off of. I’m also tapering off of medications I had been prescribed as a result of my psychological symptoms, before encephalitis was known to be the cause. Moreover, I am now officially in the CIELO clinical trial for testing the effectiveness of satralizumab in treating anti-NMDA receptor encephalitis. 当我收到正式诊断结果时，IVIG 和类固醇药物已经起效，我感觉好多了，尽管还没有完全恢复到 100%。此后我一直在服用类固醇，现在已经开始减量。我也在逐渐停用那些在脑炎病因明确前因心理症状而开的药物。此外，我现在正式参加了 CIELO 临床试验，旨在测试 satralizumab 在治疗抗NMDA受体脑炎方面的有效性。
While autoimmune disorders don’t have a known cure, the prognosis for anti-NMDA receptor encephalitis is very good. My doctors have said that it was caught early (despite the early stage being misdirected to a psychiatric hospital), and that this is associated with better long term outcomes. Indeed, I am feeling great now and recovery is exceeding my own expectations. 虽然自身免疫性疾病目前尚无已知的治愈方法，但抗NMDA受体脑炎的预后非常好。我的医生说，由于发现得早（尽管早期被误送到了精神病院），这与更好的长期预后相关。事实上，我现在感觉很好，恢复情况超出了我自己的预期。
There is some speculation that anti-NMDA receptor encephalitis could partially explain past accounts of demonic possession. Many of the people in my life, close or not, could tell that there was something seriously wrong with me. Without science and modern medicine, I can only imagine what kind of speculation folks might have ventured for the underlying cause. My full story of this disease of chaos is quite long and I’m not sure I will ever publish it in full. However, Susannah Cahalan did just that in her book, Brain on Fire: My Month of Madness. There is also a movie adaptation (as of June 2026) available for free on YouTube. 有一种推测认为，抗NMDA受体脑炎可能部分解释了过去关于“恶魔附身”的记载。我生活中的许多人，无论亲疏，都能看出我出了严重的问题。如果没有科学和现代医学，我无法想象人们会对我病情的根本原因做出什么样的猜测。我关于这场混乱疾病的完整故事很长，我不确定是否会全部发表。然而，苏珊娜·卡哈兰（Susannah Cahalan）在她的书《大脑着火：我疯狂的一个月》（Brain on Fire: My Month of Madness）中做到了这一点。该书还有一部电影改编版（截至 2026 年 6 月），可在 YouTube 上免费观看。
My disease didn’t progress as far as Susannah’s, nor did it do so in the same way. For example, I didn’t have any (known) seizures or catatonia. The rest of her symptoms, especially the psychosis, were quite similar. This has been the absolute worst experience of my life, bar none. It is also the explanation behind my higher-than-usual inactivity over the last few months. But I am slowly getting back into the swing of things with a renewed vigor. 我的病情没有苏珊娜那么严重，发展方式也不尽相同。例如，我没有（已知的）癫痫发作或紧张症。她其余的症状，尤其是精神病症状，与我非常相似。这绝对是我一生中最糟糕的经历，没有之一。这也是我过去几个月异常沉寂的原因。但我正在以全新的活力慢慢恢复状态。
I’m excited for where the industry is headed and I can’t wait to see what things will look like one year from today. I’m so happy that I get to be my “normal” self to experience that, which is a stark juxtaposition from how I felt just two months ago. Finally, I want to express some gratitude to two people in particular. First and foremost is my wife, Kaitlyn Brady. She saved my life. She never stopped believing that there was some neurological component and she never stopped fighting for me. I feel so grateful that she is in my corner. 我对行业的发展方向感到兴奋，迫不及待地想看看一年后的世界会是什么样子。我很高兴能以“正常”的自我去体验这一切，这与我两个月前的感受形成了鲜明的对比。最后，我要特别感谢两个人。首先是我的妻子 Kaitlyn Brady。她救了我的命。她从未停止相信这其中有神经学因素，也从未停止为我抗争。我很感激她一直站在我这边。
More than that, the burden she carried before my diagnosis was known is something that is truly remarkable. She wasn’t just there for me when I needed her. She was there for our son. She was there for the doctors whenever they called, even late into the night. She was there when our basement flooded. And when we all caught influenza. I’ll never know how she juggled everything, but I’ll be in her debt for the rest of my life. Secondly is Charlie Marsh. He was patient, understanding and my partner through… 不仅如此，她在确诊前所承受的重担是真正令人敬佩的。她不仅在我需要时陪伴我，还照顾我们的儿子。无论医生何时打电话，即使是在深夜，她也随时待命。地下室被淹时她在，我们全家感染流感时她也在。我永远无法想象她是如何兼顾这一切的，但我余生都将欠她一份情。其次是 Charlie Marsh。他耐心、善解人意，是我在……期间的伙伴。