Hello, I have not logged on in awhile again. Nothing has changed really, except I did get to see the big guy at UT Southwestern in Dallas, that everyone bragged on. He wanted to do an OCT and a visual field, (the exact tests every ophthalmologist has done). I gave him all my records and the detailed timeline I have written each month of my symptoms and updates. After the tests, I waited for his expert opinion in the room, curious to what this experienced old guy would say different from all the typical optical clinics I have seen. He read the papers, looked at the tests, and said "everything looks normal, so just give it time."
.....huh???
I told him "this has been an entire year, I'm going blind and everyone just keeps acting like it's nothing."
He kind grinned like I was being overdramatic, walking out of the room and said "ohh, your not going blind".
and that was it..... That was my experience with the "second best hospital in the State of Texas".
I called later and asked if he had any ideas of things to try. He said to try a couple weeks of Adderall to see if it "helped my brain focus on the peripheral". So I got a 3 week prescription from my PCP, and started to test it. The results were very negative. I felt very jittery and could not focus on anything. I cut the amount to half (5mg), but it was still pretty bad. I quit after 6 days. It was some strange irritating stuff.
I contacted him again and asked him if they could send me a referral to Neurology, since so many people have mentioned that this appears to be a neurological issue. He was very hesitant to put the referral in, but eventually he said he would do it.
I hoped maybe the Neurology group at UT would be a bit better experience, more like what you would expect from such a hospital.
Instead they called and asked why I wanted to have an appointment. I explained the situation, and how it seemed to relate to Neurology. They acted like I walked into a throat doctor with a foot infection. "uhhh, we don't know what WE would do with that. Sorry we are declining your appointment request."
Like they didn't know vision is controlled by the brain or something.

So that is my update. Sorry if it seems mostly negative. I don't have many positive feelings anymore. Another appointment with my original Neuro-Ophthalmologist in a couple weeks, mostly just an update with him and new glasses. Our last visit a few weeks ago, he said " I believe you, or you wouldn't be coming back all the time. Something is wrong with you, I just honestly don't know what". It's good to hear that. He does have me trying a light therapy right now, called Syntonic Light Therapy. It doesn't seem to do much, but at least the dude is thinking outside the box and reaching for ideas.