In mid-March, the whole world shut down. Las Vegas shut down all non-essential business on March 18th and California actually did the same the week before. With that, I received a call on March 13th, that both my March 25th (ERG) and March 30th (retinology) appointments were cancelled since their clinics were closing for 1 month. Their earliest appointments were June 17th and 19th!
Obviously, I took the appointments, but I was devastated. This meant continued vision loss for 3 additional months, potential delayed treatment, and so much unknown. I am not one to wallow in grief or get stuck in negative thoughts for long, but this was day challenged me. I laid in bed all afternoon and mostly cried. I really wasn't sure how to move forward. I am always one to expect the best but prepare for the worst, but this was not something I was prepared for. It was a difficult pill to swallow knowing that nothing would be done for an additional 3 months and I would literally have to watch my vision continue to worsen knowing that there was no reversing any damage that occurred. I was emotionally destroyed.
By the time my husband got off work, he forced me to get up since laying in bed never solved anything. Of course, he was right but I was still in a foul mood. I slowly resolved that there was nothing I could do to change this situation so I better do what I could to help myself. With this, I began to research alternative treatments for autoimmune diseases and came across the autoimmune protocol diet. While it had no evidence in autoimmune retinopathy other than anecdotal reports from patients, it did have strong evidence for ulcerative colitis and rheumatoid arthritis. So beginning of April, I decided to give it a try. Next post will be describing the diet rationale, foods, and experience.
The next steps was to see ENT and get a biopsy of my nasopharynx which showed increased activity on the PET scan in January. I was able to get into a local ENT and this may have been the weirdest doctor appointment I have ever had. At this appointment, they set me in a chair and the nurse immediately sprayed anesthetic into my nose after explaining they were going to use a small scope to go to the back of my nose. Then the ENT came in, looked and decided my nasal pathways weren't open enough so he sprayed the area again. The third time he came in, they still weren't open enough so he used anesthetic soaked gauze and placed it into my nose to sit for about 10 min. Finally, when he came back used the scope to visualize the back of my nasopharynx and said "it just looks like bad allergies with enlarged adenoids. You're good to go."
I literally had to STOP him from leaving the room and explain why I was there (because they had never asked!). Since they think I have autoimmune retinopathy which is often cancer associated retinopathy, I needed to have a biopsy per UCLA retinology. After explaining what was happening, he was like oh, I guess we should do a biopsy (shaking my head). Nonetheless, the biopsy gets scheduled for the end of February in an outpatient surgery center.
The day of the biopsy was relatively uneventful. They prepped me for surgery, gave me anesthesia and next thing I knew I was awake. After a few post-op instructions (don't blow your nose for 2 weeks and other minor things), I was on my way home to sleep the rest of the day!
The next week, I received a call that all the initial pathology was normal and the final stains would be available at my appointment. During my final appointment with the ENT, I was cleared of any nasopharynx cancer! What a relief this news was. Now to wait another 2 weeks until my appointments at UCLA!
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.