Have them check for retinitis pigmentosa. It's a genetic disorder I suffer from but it's been stealing my vision by bits since I was a child. It went completely undetected until a doctor finally found the issue in my 30s and referred me to a specialist. I didn't even know I was blind for the longest time. Then I started getting nervous behind the wheel of the car and I kept kicking/stepping on people/things. I went in thinking I might need glasses or something. I went to the specialist to find that this highly progressive disease had left me with under 10° VA in addition to some severe central blindspots. I had to take a genetic test to see if I had the treatable kind, I do not. My case can not be improved with treatment or compensated with glasses. There are however several types of RP that can be treated with gene therapy. I just didn't get lucky enough to end up in that wheelhouse.

All that aside, the doctors said it was easy to miss or misdiagnose without proper testing. If your struggling and can't find the cause, you may want to check.

You need to go to a retina specialist.

The unknown is scary especially when it comes to your eyesight. Have you been properly looked at by a retina specialist and not just an eye doctor?

Yes, I have been going through this for the last few years. My docs at duke suspect Autoimmune retinopathy and said that the ability to diagnose it is new within the first few years. Duke is worth it if you’re able to travel to them! They are the best

See a neuro-opthamology. It's just as hard with a diagnosis I think. You still deal with denial and grief.

Hello first just want to say sorry for the stress. It is never fun to feel stressed or unsure about your health.

I feel like your visual field and the tests youve had done prove that youre not making it up and its real. Like yes, you dont have an official diagnosis, but the tests are showing how your eyesight is functioning. I know it can be frustrating to be unsure, but i dont personally feel like you need an official diagnosis to confirm you are having visual difficulties.

I've was misdiagnosed 2 times before this one, but have pretty much always had some sort of disgnosis. I think its different person to person, but for me it didnt change that much (honestly i kinda wish i wasnt diagnosed bc my doctors put me on an experimental diet to try and fix my eyesight. It didn't help my eyesight and now i have constant fatigue, muscle weakness, and other health problems that i didnt have before). Like i know my vision is going to get worse over time, but my retina specialist is kinda unable to tell me when or how much. There are alot of causes of blindness and visual impairment, and honestly most of them arent curable, some are managable with treatment.

Im not sure if your U.S. based but maybe ask your current eye doc to connect you with the department of the blind and visually impared (D.B.V.I) in your area. In the short time I've been connected with the d.b.v.i., they have helped make my life so much easier and have honestly done more for me than any retina specialist has ever done. They will teach you some tools to better manage your vision loss and provide classes and stuff that are pretty helpful. You can also get tools to help yourself such as magnifiers, bump, dots, etc.

I would still follow up with the retina specialist bc like i said everyone is different when it comes to what they want and need, and if a diagnosis is going to help you then that is completly valid and cool!! You do whats best for you, it can be hard to have a lot of vision loss.

I know this is alot to read, but i hope it helps, let me know if anything i wrote is unclear or youd like further explanation. Hope you have a good week and your stress goes away.