Oh look! Someone else has a doc that thinks everything they can’t explain is caused by dry eye too. Glad to know I’m not alone but boy does it suck.

Have you had an ERG? It may help the docs figure out the light sensitivity. Also, if you don't live near a major eye center, it may be helpful to travel to one where the docs have seen more unusual cases. I have Autoimmune Retinopathy, among other things, and it took years to diagnose.

I am not an expert, but have you started any new medications lately? Or might you be vitamin B12 deficient?

Some causes are just way more obvious then others, when optometrists and ophthalmologists look at my retina with the little flashlight they see a huge mass of black webbing which narrows things down quite a lot. If they don't see anything wrong with the retina then it is gonna be way harder to pin it down

I was actually able to get my optometrist to email me the jpegs of my retina so I could show it to other people and get their own opinion. Its worth a shot asking for those even if there's nothing wrong there just because its cool

I have been blind in my right eye since birth. I see specialists once a month and they still can't tell me why I am blind in my right eye. All they can say is optic nerve damage, but there is none, then they say a tumor, but it's non cancerous. Then it became coats disease, now it's just an "abnormal cell mutation" ... lol I'll always be blind in the eye, but I'm dealing with degenerative loss at this point as I've lost almost all peripheral vision out of that eye. It's tough for sure and I still have one good eye. Could not imagine losing both and now knowing why.

My father had a stroke a couple years ago and lost vision in both his eyes and they docs cannot pinpoint why. Tough tough.

I relate so hard to this. I have always had mild near-sightedness, but not to the point of needing glasses though they did not even help because it turns out the off hand comment that my childhood optometrist made about my pupils fluctuating when they should be holding position was causing more problems than people seemed to realize. In fact it was not until years later when I moved and a new one took my case that we realized it was a thing, as he wrote it down and never told us. It came up because the new optometrist thought it odd that I had glasses, later I would find out the original optometrist was just a glasses pusher because of a kick back they get. Anyways, I dropped the glasses and started eye exercises to try and regain some of the worsened vision after needlessly wearing glasses. It ultimately did not work but the damage was not bad enough that I could not function at the time. No diagnosis was made at the time, it was just an oddity that was noted about me though much later like just over a decade from this time I would be diagnosed with Dysautonomia which would explain the pupils.

Nearly a decade down the line I started experiencing significant light sensitivity, like black out curtains for all the windows, lights off at all times and unable to open my eyes for more than a couple minutes at a time. I would be diagnosed with Dry Eye Syndrome and given drops which helped, but I remained unable to use my eyes even with sunglasses for long periods of time. Since then I have noted a distinct discomfort or pain when I move my one eye and in the same eye I suspect that I am now missing some peripheral vision, though I have not been able to get in to be seen because the government is doing the eyecare field dirty and as such there are protests going on that simply mean I have lost access to this essential service. Additionally I seem to have also developed large circles around light sources(street lights and car headlights are the worst for this) that prevent me from using about half my vision, and in regards to the cars the uneven response to light being added/removed means my stomach gets upset.

I am mildly functional, I have gotten to the point with the drops where I can get what I need done, and found doubling up on sunglasses has helped as well. But I am in the lucky position that despite my eyecare professionals being absolutely useless and claiming I have 20/20 vision, I had an independently trained service dog that I was using prior to the worst of this starting. So on my own I was able to teach her to do everything that a dog from one of the guide dog schools does. So even when I could not open my eyes, I could still get what I needed done because she really stepped up to the plate. But ultimately I have fallen through the cracks, all I want is to get the O&M training so that a situation like I am in right now, where my dog retired suddenly and my successor is still about 18+ months from being able to take on full guide work does not leave me stranded again. Mostly it is familiarity with my environment that has me covered but I am still ending up in dangerous situations because of useless doctors.

Well I've had glaucoma my entire life, and went blind in my left eye very early, so the possibility of one day going totally blind has always been very real. When I was 12 a physician told my mother that by 20 I would be totally blind, but since my vision remained stable long past that I thought it would stay that way forever.

In September of 2011, when I was 29, I started noticing very faint coronas around lights that I had never seen before, but was alerted by having been told that it was a sign of elevated intra-ocular pressure when I was a kid, so I immediately checked my doctor who didn't notice anything since my pressure was fine (12mmHg) there were no opacities in my eye, and neither my acuity nor my vision field had changed.

Time passed and I began having difficulty reading dark text on bright backgrounds, but doctors kept reassuring me that everything was fine until a year later I was told that I had a cataract, however since I only had one useful eye left, they instructed me to let it stay until I couldn't see anything since they didn't want to risk a surgery, so I kinda felt relieved that it wasn't anything permanent and did as they said.

In March of 2014, after an accident in which I fell off a train platform and got hit by an incoming train due to my contrast perception being so bad that I couldn't even distinguish the edge of the platform, I decided to finally have the cataract surgery. However I do not know what happened during the procedure since I was under general anesthesia, but I was seeing pitch black when I woke up, and while I regained residual vision the day after, all I could see were extremely fuzzy blobs of light and color. I checked with another doctor who performed a new kind of exam on my eye (an Optical Coherence Tomography), and this doctor told me that I had severe optic nerve atrophy and there was nothing that could be done about that, so I stopped taking medication as I stopped caring about my sight at that point and my residual vision faded away over the years.

Since then I've learned that loss of contrast perception can be a sign of optic nerve damage, that eye pressure raises significantly during the night, that my eyes can't be checked properly with an ophthalmoscope because my pupils don't dilate thanks to a surgery that I had right after being born, and that an OCT could have helped observe my optic nerve much earlier since it can see through constricted pupils and even opacities. Unfortunately I live in Portugal and there weren't any medical facilities with OCT scanners in the country back then, and apparently doctors weren't even aware of the existence of such equipment since nobody told me that I could always look for help abroad.

I don't know whether my vision could have been saved, because according to some studies glaucoma might be an auto-immune disease, therefore once the optic nerve damage begins there's no way to stop it, but I feel that I didn't do enough to save my vision and will regret it forever. I'm also not sure whether I actually had a cataract, but I like to believe I did and it was incorrectly blamed for my deteriorating eyesight.

Lol I also have the "dry eyes" diagnosis even though my eyesight got overnight blurrier and darker in dim lights, I have night blindness and halos around lights ans am unable to work on a computer anymore. At first I thought its visual snow syndrome but from everything I read in the vs subreddit it doesnt seem to be so debilitating for the people there like it is for me...