A few weeks ago, I suddenly started going blind in my left eye. Yes, really. If I closed my right eye, about 80% of my vision was dark grey or black. I couldn't see my own hand in front of my face! Thankfully, Opus and o3 (I'll just refer to them as AI; all queries were sent to one or both, and distinguishing between them is not important to the story) massively helped me, and, I believe, essentially saved me from it becoming a permanent issue. Eventually, I was diagnosed with a rare autoimmune disease called MOG-associated disease (MOGAD). I'm not sure what this looks like going forward. But, here, I'd like to tell my story. This is part medical case study, part personal story, and part AI capabilities demonstration.
NB: Nothing I say here is medical advice. I may sometimes cite facts that I don't have a source for, because I read it somewhere and I don't want to dig up the source. If you see something factually incorrect, please let me know. The title is a little clickbait-y, but it's true.
One August morning, I woke up and noticed that I couldn't quite read the text on my phone screen, using my left eye. It looked like a small grey distorted area was in the middle of my vision. Huh, that was weird. I got up, covered my right eye, and looked around my room. The grey distortion followed wherever I looked: I couldn't see my closet properly, nor the things on my desk. But if I looked away from the object, I could see it again. I chalked it up to a headache or sleep deprivation, or something.
I went about my day. My vision, unfortunately, was getting worse. The grey spot in the middle was slowly spreading. I became increasingly worried as the day went on. If I was walking down the street, and covered my right eye, I couldn't even see people walking by me. Foolishly, I went on a bike ride at night, and noticed that I couldn't even see the cars passing me on my left.
Now, I was seriously concerned. By this point, there was a sort of grey haze in my entire left-eye vision. So, of course, I asked AI. I described to it what I just wrote above. It replied with great alarm, saying that it could be something in the "back of the eye", i.e., due to the retina, the nerve, or vascular issues. Any of these needs urgent medical attention, lest the damage become permanent.
I asked it: how can I actually tell whether it's an issue with the back or the front of the eye? It helpfully told me that if I put eye drops in my eye, and I see my vision correct, even if temporarily, then it is likely a front-of-the-eye issue (e.g., dry eyes, irritation, etc.). At this point it was 1AM. I looked up the nearest pharmacy, and found a 24hr CVS in Alameda, about a 20 minute drive away. I hopped in an Uber and went there. It was totally empty, save for a woman in a furry costume. I went to the eye drops aisle, and was overwhelmed by the number of options. I took a picture of the aisle and sent it to AI, which replied with which one to buy. Brilliant! I bought the drops, and took an Uber back to Berkeley. In the Uber ride, I kept covering my right eye, and was now quite alarmed to see that I couldn't even see the driver's head in front of me, let alone the road or any cars. Hopefully, the drops would work.
When I got home, I went to the bathroom and looked at myself in the mirror. With my left eye, I couldn't even see my own face. I took out the drops, and put them in, following the instructions. When I opened my left eye again, I was, unfortunately, still unable to see my face. I was so hopeful that the drops would do something that I thought maybe I just needed to focus harder. I really strained my brain trying to get it to see my face, but to no avail. I told AI that the drops didn't work, and it started ringing the alarm, saying that I needed to go to the hospital immediately.
As a Canadian in America, I didn't know how the healthcare system really worked. I was extremely loathe to go to the hospital. I asked AI if there was an alternative. It suggested that I could go to the optometry urgent care centre on Cal Berkeley campus! That sounded like a good idea, as I lived near campus as well. I went to sleep, resolving to go to the urgent care centre as soon as I woke up.
The next day, my vision was decidedly worse than it was before. I went to the urgent care centre, and the wonderful optometrist there did all sorts of tests on me. To give you a sense of how bad my eyes were: I couldn't do a single letter on the Snellen chart (that chart where they you read a bunch of letters), because I couldn't even see the chart itself. They gave me a peripheral vision test, where I put my eye into a glass sphere and they asked me to click a button when I saw a light. I sat there like an idiot for minutes on end, because all I could see was grey in front of my eye.
When they did a retina scan on me, they quickly pinpointed the issue: I had optic neuritis, meaning my optic nerve was (extremely) inflamed. Typically, the back of the retina has a clean yellow disc, which is the optic nerve. My right eye looked like that. But, scarily, my left optic nerve looked all "squiggly" and faded, what the doctor would call "blurred margins". The optometrist told me that I certainly needed to be seen by a doctor, and get treatment immediately. He referred me to UCSF (University of California, San Francisco), and said to expect a call from them the next day. I went home, feeling assured.
The next day, sure enough, my vision was getting even worse. At the urging of my good friend Winnie, I called UCSF to try to expedite the process. That was a remarkably frustrating experience, as I got bounced around to ten different phone numbers, each of which I was told was the wrong one, and when I finally got through, they told me they didn't have my referral! I called the urgent care clinic again, and they said they had already sent it. I called UCSF again, and they insisted they did not have a referral. After spending hours on this, and slowly observing my eyesight diminishing to the point I couldn't see my surroundings in the shawarma shop I was eating at. Totally frustrated and helpless, I decided to just go to an emergency room. Now, I knew that I couldn't just go to any ER. I had to go to one that had on-call ophthalmologists. I asked AI, and it told me to go UCSF Parnassus, so I called an Uber and off I went.
Once I got to UCSF Parnassus, I explained to them that approximately 80% of my vision was gone, and how the urgent care centre had already referred me. I was pretty immediately seen by an ER doctor and a team of ophthalmologists. They quickly confirmed that I had optic neuritis. Unfortunately for me though, they said that they could not treat me until they do further tests, including, most importantly, an MRI. Because of the approx. 12-hour wait for the MRI, I would have to stay in the hospital, in the clinical decision unit (CDU), which is basically their intermediate care unit -- not quite admitted, but not outpatient. I was pretty worried about this, as here I was alone in the hospital, in a foreign country, and I was seriously concerned about the inflammation causing permanent damage. But, what could I do?
I changed into my hospital gown, and got into my bed. I spent hours devouring everything I could about optic neuritis from AI and UpToDate, which I had access to through my UToronto email. I could see that they wanted to do an MRI to determine the cause of the neuritis. Optic neuritis is, to my understanding, categorized as either "typical" or "atypical" -- typical essentially means multiple sclerosis (MS), and atypical is an umbrella term for a bunch of causes. I really did not want MS. I also saw that the treatment for optic neuritis is essentially to pump me full of steroids, which are anti-inflammatory. I read statistics that said that as long as the steroid course is started within a few days of the onset of the neuritis, 90% of people recover to 20/40 vision or better, within a couple of months.
The next 36 hours in the hospital were dark and difficult. I definitely have some psychological trauma from it. Alone in the hospital, while the world around me was turning darker and darker -- I was terrified that I'd never see again out of my left eye. I started to think about how I'd ever do research again, or even how I'd function in society. I was constantly poked and prodded, wheeled around to different tests and procedures. Frankly, I really just wanted my steroids. Anytime a clinician would come in, I would ask them for steroids. But, they had to do all these tests first. A gaggle of medical students came in to see how my left pupil didn't react to light (I had what's called a relative afferent pupillary defect). Some of the nurses also found this quite interesting. I was glad I could be an educational resource for them, truly!
I finally had my MRI, and got the results back a couple of hours later. The results were, thankfully, negative for MS. On the one hand, that was a relief. On the other hand, this meant they had to continue to do even more tests, to distinguish between the atypical causes. At this point, my vision was absolutely abysmal, and I was getting impatient. Also, at this point, I was not in contact with anyone. None of my friends knew this was happening, and I didn't want to alarm my family. During this whole ordeal, I pretty much just updated AI on everything that was happening. It was a continuous fountain of information for me. Otherwise, I wiled away the hours reading every paper I could find on optic neuritis.
The neurologist informed me that I would have to do a lumbar puncture, aka a spinal tap. This is when they insert a needle into your (lumbar) spine and withdraw some cerebrospinal fluid (CSF). Admittedly, I was quite scared of this, and I really did not want to do it. Agitated already by the number of tests I had already went through, and terrified that this was delaying treatment of my eye, I pushed back. I insisted that I really needed the steroids. The neurologist said they could not do it until they did the lumbar puncture, as they needed to rule out an ongoing infection, as steroids would make the infection worse.
I started to debate the neurologist. I explained the concept from decision theory of the "value of information", and insisted that I had no other sign or symptom or indication of infection (e.g., meningitis). So, what was the value of the lumbar puncture, and how does this weigh against the cost of delaying treatment to my eye? But, they would not budge. I even insisted they ask the head of the neurology department, but the head also said no. I was left with no choice but to do the lumbar puncture. It was a rather painful and uncomfortable experience, but not as bad as I expected, and I am appreciate of the skill of the neurology resident who performed the procedure. Afterwards, I had an awful headache and threw up twice.
Fairly quickly, the lumbar puncture results ruled out an ongoing infection, and a couple of hours later, they hooked me up to an IV steroid drip. Finally! This is exactly what I had been waiting for. They said that I was actually okay to go home, but I would have to take a ton of oral steroids to continue treatment. The UCSF doctors told me that I should go back to Canada ASAP to be followed up long-term by specialists there, to be extremely vigilant about if my vision gets worse (and if so, to go to the hospital immediately), and that I had come in a short enough window that my prognosis was likely good. So, finally, around 11pm, I got dressed, gathered my things, and went home. The first thing I did was go to to an Indian restaurant near the hospital. Maybe because I showed up bandaged up and with my hospital bracelet, or maybe because I told the waitress I had just gotten out of the hospital, they gave me a free mango kulfi. It touched my heart.
The following day, I had a bunch of errands to run. For one, I had to pick up my prescription. Because I needed so many pills, I could only obtain such a large volume from the UCSF pharmacy itself. I was literally taking 25 pills a day, and all with breakfast too. I packed up my Berkeley apartment, said some goodbyes, and flew back to Canada the next morning.
Remarkably, on the flight, I started to see my vision already improving. I could finally see my own hand again, for example. I nearly cried when I saw the color green again. These things sound trivial, but you truly take them for granted until they're gone. At last, I arrived in Toronto. My parents were of course relieved to see me.
It's been a little over a month now since the incident. My vision is definitely much better than those horrible first days. It's still not perfect: I still have some grey haze in the left eye, and still can't really read text on a screen. I was finally able to see a neuro-ophthalmologist in Toronto, who confirmed that my vision had much improved. However, it will never be as good as it was before, as there is unfortunately some permanent damage to my optic nerve. Thankfully, my right eye still works fine, which enables me to still do my work. It does worry me if I think about my left eye too much. For better or for worse, my recovery was good enough that two weeks after the incident, I defended my PhD!
The UCSF doctors called me about a week after I got home, and told me that my CSF had tested positive for MOG (myelin oligodendrocyte glycoprotein) antibodies. This means that I have a disease called MOG-associated disease (MOGAD), a rare autoimmune disorder that attacks the nerves in your eye and spinal cord. MOGAD is so rare that it was only defined in 2015, and there is no cure. I'm concerned about what the future looks like for me with MOGAD. About 50% of people only have one incident. I dearly hope I'm in that group. I'm now seeing a neuro-inflammatory specialist soon, who will help me manage my MOGAD going forward. Of course, I have been reading everything I can find on MOGAD. I've now become extremely interested in it, and am now putting effort into supporting awareness and research for it.
I have a few key reflections from this experience. The first is how fragile the human body is, which I know is a big cliche. But, this incident was a huge wake-up call for me to take better care of myself. I was certainly working extremely hard over the last year, and was constantly stressed and sleep-deprived. I don't know if this had any causal effect on triggering an MOG episode! But, the general realization of the fragility of life propels me to live more intentionally.
I'm quite grateful that I went to the hospital when I did. I have read case reports, and heard stories from other people, where people went in even weeks after the onset of symptoms, and now have permanent blindness, or even cognitive impairment. I certainly owe AI for coaching me through this entire ordeal. To summarize, it:
One of my key takeaways is that eye symptoms should not be dismissed. They should be taken very seriously.
Because my left eye is still not fully recovered, and alas never will be, I've been thinking a lot about how to change how I work. I am used to sitting down on my laptop and coding or writing for hours. Some days I can be on my laptop for 12 hours or more. This is not much more difficult for me. My right eye is burdening the load asymmetrically, and hence gets tired. I am taking deliberate steps to, e.g., not go on coding benders like I used to during my PhD. In the longer term, this may mean being more careful with career choices. But, I'm not sure what that would look like. I still love research -- and it's hard to do math or programming without reading.
The UCSF doctors, nurses, residents, PAs, and other staff were all absolutely amazing. UCSF Parnassus is a truly great hospital. For days after I was discharged, they kept calling me to check up on me. I was blown away -- no doctor had ever cared about me like that! They even called to check that I had booked my flight to Toronto.
I am extremely grateful to my MATS research manager, Jonathan Michala, who was extremely supportive during this whole ordeal. For example, he drove me to San Francisco to get my medications, and continues to check up on my recovery.
I'm also thankful for my friend Winnie X, who encouraged me to pester UCSF to see me as soon as possible. If I had been passive and waited for them to call me, my prognosis might have been different.