At the end of January, I had an appointment with UCLA retinology. This appointment was originally scheduled for the middle of February and shockingly got scheduled earlier! Similar to many of my other eye appointments, this started with some diagnostic exams including the OCT and visual acuity exams. After these were completed, the retinologist examined my eyes and reviewed my previous medical records and workups. From there he sent me to do a wide angle eye angiogram in which they inject dye in your veins and take pictures of the blood vessels in your eye. Then it was back to see the retinologist to review and set the next steps.
The eye angiogram showed some blood vessel leakage in the peripheral areas of the left eye and some minimal in the right eye. The retinologist explained this was very non-specific and can occur in normal eyes but in combination with my symptoms and mild inflammatory cells visualized on fundascope, he believed there was an inflammatory component to my vision loss. Furthermore, he explained that the ERG I had in November may have been too early to see any changes and we should do another one in a few months. He reviewed the enlarged left blind spot that had been present and increasing in size over the months.
Although he did not have a diagnosis for me, he thought this could likely be posterior uveitis, autoimmune retinopathy or one of the many types of AZOOR (acute zonal occult outer retinopathy). Since autoimmune retinopathy is frequently due to cancer, he wanted me to ensure that I had a biopsy of the PET scan positive nasopharynx prior to my next visit. We discussed a trial of steriods if the biopsy was negative and got scheduled to return in the middle of March for an ERG, eye angiogram, and doctors visit.
Even though I left this appointment without a diagnosis, I felt as though I finally had some direction and was closer to answers and even potential treatment. As silly as it may sound, knowing that there were at least some abnormalities identified made me feel as though I wasn't "making it up". Obviously, I already knew that but it is hard to describe and live with something that is invisible to everyone else and the only thing you can do is explain what you are seeing/feeling.