- CASE FILE
33 year old experiencing vision changes, blind spots, brain fog, inflammatory problems. Terrified of losing eyesight and cognitive changes.
ABOUT THIS CASE FILE
I’m in my early 30s now but symptoms began in my late teens early 20s.I have had general autoimmune symptoms which have rendered me unable to work or participate in cherished hobbies, but what is worse and terrifying are new vision problems and ocular symptoms. In April of this year, over the course of a week, I began having problems with my eyes. I woke up and both eyes felt irritated, like I had sand in them. My left eye began twitching. I thought it was allergy season, upped my artificial tears and decided to keep an eye on it (pun intended). The next day I had a big floater in my left visual field but I only saw it in bright lights, so I again decided to wait and see what happens. A few days later the big floater dissolved into a lot of teeny floater. The next day I saw flashes of light and a small curtain over part of my vision. I thought it was a migraine aura, took migraine medicine and went to bed. The next morning I woke up with a blind spot, like my eye lost pixels. I decided that this was getting worse and not better and went to the eye doctor. They diagnosed me with a retinal stroke, branch retinal artery occlusion, a small detachment on the left, inflammation of the optic nerve and disc, retinal hemorrhage, leaking retinal blood vessels in both eyes, retinal Vasculitis in both eyes. I have a reduced visual field on the left periphery and bottom center of my visual field. My eyes get tired and hurt. I have a hard time using screen devices, I walk into things on the left. My visual acuity is reduced. I am terrified what happened on the left will happen again on either eye and I’ll lose more vision. Along with this I’ve had significant problems with memory and concentration, word finding and saying the wrong words. I feel like Im losing IQ points. MRI of brain was normal. I have joint pain, stiffness, swelling, hyper mobility. I have dry eyes treated with punctual plugs and and mouth. I use eye drops frequently and need to have water to eat food. I have had lots of autoimmune testing and have never had antibodies high enough to detect a disease. No rheumatoid factor, no ANA, no ANCA, no SSA or SSB, no lupus anticoagulant, but have celiac disease and Anti CCP antibodies, just not high enough to be classified as positive. I was diagnosed with seronegative rheumatoid arthritis, secondary Sjögren’s syndrome, and hyper mobile Ehler’s Danlos Syndrome. My ESR and CRP continue to be high.With the EDS I have POTS (tachycardia), and mild gastroparesis. I also have asthma and an under active thyroid. My doctor thinks seronegative RA might not be the right diagnosis but I don’t fit the molds for either sarcoidosis or Behçet’s disease which are frequent causes of retinal Vasculitis. I’ve had 3 separate sinus surgeries in the last 10 years. I had my appendix out when I was 18, I have kidney stone like episodes with pain, vomiting, and blood in the urine but no stone has been found. My tear ducts we’re closed when I was born had to be surgically opened.