A little under a month ago, I lost around 95% of the vision in my left eye over the course of three days. This (understandably) led to quite a few visits with doctors in a very short period of time, culminating in a final diagnosis of “We’re really just not sure.” Since it came out of absolutely nowhere and can apparently happen to anybody anytime, I figured I’d kind of document my experience here for others to read about. If you’re interested in this, read on!

Brief Background

First, I’ll give you a brief background. Over the last year, I’ve experienced a strange assortment of neurological symptoms which seemingly had no connection. I was initially diagnosed by my primary care physician with a mild anxiety disorder (which, to be fair, did line up with most of the symptoms). But as more symptoms presented, including half my face going numb one day and lasting for a couple weeks, we began exploring other options. I saw a neurologist, had an MRI (clean), and eventually just had blood drawn for my doctor to run a bunch of tests to see if we could find anything unusual.

And find something unusual we did! We discovered that I had a vitamin B-12 deficiency, so we began injections to counteract the effects. After a month of weekly injections, almost all of the symptoms began to abate. After the fourth week, we moved to monthly injections because my doctor thought my B-12 levels would probably be stable enough at that point (based on how it’s gone with prior patients he’s treated). This went well enough…

…until just after the second monthly injection. About a week after that one, I started experiencing some of the old symptoms again. I thought maybe they’d go away on their own, but after a week I began to think that maybe my body was depleting the B-12 faster than we were injecting it, so I scheduled another appointment with my doc. Of course, doctors are busy, so he couldn’t get me in for another month… so I figured I’d wait it out. It wasn’t super urgent.

Mr. Stark, I Don’t See So Good

Until, suddenly, it was super urgent. Only it didn’t seem so immediately.

One Saturday about a month ago, I noticed something weird with what I was seeing in my left eye — specifically, I had the impression that there was some rheum (“eye goop”, “sleep dust”, etc.) stuck under my contact. It was just like there were some spots missing. Since I was in the middle of an action-packed day of playing Magic: The Gathering with some friends, I figured I’d just deal with it when I took my contacts out that night. No big deal.

Except when I woke up the next day, my vision had quite clearly become unclear. It was like a vignette effect had been applied: the periphery was noticeably darker than it had been the night before. Now, it was pretty mild, and I could still mostly see. I’d say my vision was at like 90-95%. I mentioned it to my parents, and decided I’d talk to my doctor about it the next day since I was supposed to be going in for the next B-12 injection anyway.

The next day it was even worse — probably about 50% vision. By this I don’t mean that everything was black. Rather, the edges were a bit darkened, and everything else was… hard to see. Like static on an old TV screen, or like looking through a stretched sheer fabric. The light was all there, but I just couldn’t quite make things out correctly.

So I mentioned this to the nurse who gave me the B-12 injection. She seemed pretty alarmed by it, though she maintained composure, and told me she’d talk to the doctor and they’d call me back. I figured I’d hear the next day or something.

(At this point you’re probably thinking “Pierce, why did you not think this was more urgent?” And the answer is: I am prone to overreacting about medical things, so I finally decided to take it slow and steady. It turns out, this was the wrong time to do that.)

The doctor’s office called back and told me to see an eye doctor immediately. So I called my optometrist’s office, and they told me to come in immediately. They did some tests and determined that the eye itself was physically fine — but the optic nerve was not. He said that either the optic nerve was inflamed (a condition called optic neuritis), or else there was a tumor pressing in on the nerve and thus preventing the signals from being transmitted correctly.

You may think at first that the tumor would be the more terrible of the two conditions; after all, people get inflamed joints and things all the time, so inflammation doesn’t seem like a terrible thing, right?

Except optic neuritis, the optometrist explained to me, is usually the first symptom of neurological autoimmune diseases like multiple sclerosis (MS) and neuromyelitis optica (NMO). So we kind of had our fingers crossed for an easy-to-remove tumor or something of that nature.

The optometrist ordered an MRI of my eye and brain so we could diagnose.

The First MRI

I was able to get in for an MRI the next day. Fun fact: MRIs are not very exciting. I mostly just try to nap through them. They’re kind of loud and not terribly comfortable, but they can give you warm blankets which makes me sleepy.

Within an hour of having completed the MRI, the optometrist called me back: there was no tumor, and they could clearly see signs of inflammation of the optic nerve. However, he also informed me that there were no lesions in my brain — which is a good sign against MS and NMO (which both present with brain lesions). He told me I should see an ophthalmologist immediately. Of course, it was 6pm at this point so everywhere was closed. I’d have to wait until the morning.

Side note: by this point, I had lost probably 95% of the vision in my left eye after just three days (this was Tuesday). I could barely see anything at all; everything was just… missing, except for a small sliver along the upper left edge. By “missing” I really mean that the signal was significantly reduced. I could tell when light intensity changed, for example, but I couldn’t see shapes or edges, and I could only barely discern movement if it was within a foot of my face. (Fun fact: this puts my vision at about the same quality as that of a snail!) My right eye was still operating at 100% though, thank goodness.

The next day, my mom and I set out to find an ophthalmologist who could see me ASAP. It turns out most doctors are quite booked and can’t just make emergency appointments or something. Eventually we found an office who initially gave us an appointment a week out and said they’d call us if anybody canceled, but they actually called back less than 30 minutes later because “[the ophthalmologist] would like to see you as soon as possible. Can you come in today?”

We went, and he confirmed everything: it was an optic neuritis, it was very aggressive (for some people it can take a month to set in completely), and there was not much to be done except wait. However, he did mention that we could try a course of IV steroids, which wouldn’t affect the overall outcome but should accelerate the healing process. First, though, he recommended we see a neurologist.

So the next day we went to see the neurologist. (Well, my mom saw and I half-saw.) She took a lot of notes about all my recent strange symptoms, and they looked over my MRI results more closely. They confirmed the diagnosis of optic neuritis (yay three confirmations), and also confirmed that my brain was completely clean of any problematic bits.

But… it wasn’t all kittens and roses. She informed me that sometimes MS and NMO will first present in the spinal cord instead of the brain, so they ordered an MRI of my neck to see. She also ordered the course of IV steroids.

For those keeping track at home, the meeting with the neurologist was on the Thursday after initially losing sight the previous Saturday. The earliest I was able to schedule the MRI was two Saturdays away (though they said I could call each day to see if there had been any cancellations). But we could start the IV steroids the next day, which was something.

In addition to seeing the neurologist, I was also able to meet with my primary care physician. We discussed everything going on and he seemed genuinely concerned about the optic neuritis. We agreed that although it doesn’t appear to be common, maybe there was a link between the B-12 deficiency and the neuritis. So we decided to wait a couple weeks so we could take some blood for tests, and then adjust the frequency of injections back to weekly and see if that could resolve some of the symptoms.

Gettin’ On the Juice

After some minor miscommunication issues among various healthcare offices, we were able to get me in for the steroid treatment the next day (Friday) at an infusion clinic that was open through the weekend: it turned out I would be receiving infusions for five days. I was warned that there were a great many potential side effects of being on the steroids (Solu Medrol or methylprednisolone, for those curious), but I should especially watch out for being overly irritable, angry, and hungry.

The infusion was over 90 minutes, during which I mostly just sat there. Around 15 minutes in, I started to experience a funny metallic taste on my tongue. They offered Jolly Ranchers to counteract that, which I gratefully accepted.

The rest of the infusion process was uneventful. The doctors had been clear that we shouldn’t expect immediate results, but that hopefully my vision would begin to restore over the next little while.

But by the next morning, there was a noticeable improvement! It still wasn’t great — probably only a 5-10% improvement. Still, it was exciting to have even a little progress so quickly.

After the third day of infusions, I started to experience some side-effects of the steroids. I didn’t get irate like I had been warned, but I did feel flushed and my blood pressure was noticeably elevated. There were some other little things that came up, so we just reduced the speed of infusion for the next two days and that seemed to alleviate the symptoms drastically. I also noticed my vision had continued to improve: by Sunday night, I had non-zero vision in maybe 75% of the field of view, though there was still no single region where there was greater than 40% resolution. Still, it was progress, so I was happy.

On Monday morning I went to my optometrist for a field vision test, where you look into a sort of hollow orb and they blink lights at you. The purpose is to test your peripheral vision by clicking a button every time you notice a light blink. My right eye did pretty well, but the left eye was fairly poor. Still, I did better than I had expected!

The Second MRI

After the appointment, I called imaging scheduling about that MRI. Fortune was on our side: there had been a cancellation, and I could get my neck MRI done that same day! That was five days ahead of schedule, so we jumped on it. First I went for the fourth round of IV steroids, and then almost immediately went to the hospital where I was able to get the MRI done. Like the previous MRI, this one was boring (and cold). Luckily it was a bit faster — only about half an hour.

The neurologist had told me it’d take a little longer to get the results back from this one, though it was unclear why that was the case. So I just had to wait.

The next day (Tuesday), I went in for the final steroid infusion. By this point I could really feel the elevated blood pressure and I was looking forward to being done with it, but I was also happy that my vision had continued to improve somewhat.

Finally, on Wednesday we heard back from the neurologist. She informed me that the MRI of my neck had come back clean! There was no evidence of anything truly terrible going on, which was a huge relief. She said that we could now safely relax a bit, and we’d keep our existing follow-up appointment which was scheduled for a couple weeks away.

During all of this, the other strange symptoms I had been experiencing as a result of B-12 deficiency had continued to worsen. In an effort to be proactive, I scheduled an appointment with a gastroenterologist for the next week. Apparently many causes of B-12 deficiency can be linked to the digestive system, so I figured I’d start there.

Improvement, Prognosis, and Plans

Despite the strange B-12 symptoms, my vision continued to improve. By Friday I was able to attend our weekly programming languages reading group, which included driving myself to campus! Vision in the left eye was probably around 60% of normal. Not great, but significantly better than it had been just a week prior.

On Monday, I had blood drawn for additional testing related to the B-12 deficiency.

On Wednesday, I had appointments with my primary care doc and the gastroenterologist. Primary care said the B-12 levels had come back higher than they were (and technically now in the “normal” range), but were still low enough to warrant more investigation. We decided to go back to weekly injections for a while, then take another blood test, and then see where that left us.

The gastroenterologist could not immediately identify any obvious cause based on my symptoms, but said that everything was strange enough that it warranted some biopsies. We scheduled an upper endoscopy for about a month away (since that’s the earliest that was available).

On Thursday, I had a follow-up appointment with the ophthalmologist. He inspected the eye and said that the eye itself still looked 100% healthy, and the nerve appeared healed (at least from the side that enters the eye). This was both good and not-good. An obviously-unhealthy nerve would mean there was still healing to be done. A healthy nerve means there’s nothing worse happening, but it also means that at this point we didn’t know whether my vision would continue to improve appreciably. He said we really just had to wait and see. In many cases, optic neuritis doesn’t fully resolve until six months to a year after the initial onset.

(Spoiler: my vision has continued to improve, but it’s slowed down significantly. There’s only a mild change on a day-by-day basis. Still, I’ll take it! Slow improvement is better than no improvement.)

This all brings us to Tuesday of this week, when I met with the neurologist. She said that everything on the MRIs indicated that things were good — there is no sign of MS or NMO, or any other disease of that nature. Which begs the question: why is all this stuff happening?

And the answer is that we’re just not sure. It’s truly a mystery. She said that sometimes strange neurological issues can come up and then resolve themselves, and it’s just kind of a thing that happens. She suggested that we could look into some additional nerve testing to try to explore potential causes, but in the meantime we’d plan to just have a follow-up appointment in a few months and see how it was going. She told me to call if anything significant happened, but that she suspected it wouldn’t.

Today

Each day, my vision seems to have improved just a little more, though it can be hard to tell for sure. Today, it’s probably operating at around 75% efficiency. I can see shapes pretty accurately (although edges can be difficult to identify), colors seem to be more correct, and I can even read on my phone with my right eye closed (which I couldn’t do just a week prior).

It’s still like seeing through a stretched sheer fabric, or like watching a TV when the antenna isn’t adjusted correctly and you get static interfering with the picture. What I can make out is clearish — it isn’t blurry or distorted. But it’s like there’s something translucent obstructing the view somehow, making it hard to see details.

We remain hopeful that it will continue to improve, but for the moment I’m grateful for the rapid progress that’s been made despite the potential worst-case scenarios. I am also thankful that the doctors I was able to see (ha!) and the other healthcare staff treated it so seriously and with great urgency. I can’t imagine what it might’ve been like if I had had to wait to be seen by someone.

That’s all for now. I guess I’ll keep you posted if we learn anything else about all this! In the meantime, I should get back to editing our paper for POPL. Cheers!