Firstly, I just wanted to thank the community here as a whole, specifically the Neuro/Vision focused societies. Your insight, knowledge, and shared experiences have been a huge source of support and strength for me the last few months. So really, thank you!
The basic rundown is I'm a 23 year-old, formerly healthy guy. For the past ten months I've been experiencing progressive degradation in visual acuity of both eyes, along with various other Neruological/Optical symptoms. Before this incident, I'd always had 20/15 vision, an optometrist once remarked that I could "fly planes with those eyes".
While doing volunteer work in Japan I suddenly became very ill, with a high fever and terrible stomach pains. The 104 F degree (40 C) fever wouldn't break, so after 2 days in bed I got on a train and went to the ER. The doctors did blood work with results coming back indicative of a viral/bacterial infection. I was given some general anti-inflammatory medicine and told come back if things didn't subside within the week. After another ER visit and about three weeks of feeling awful, the symptoms seemed to finally subside. I then left to work with another organization in a nearby city, assuring myself it was just some weird viral thing that my body had fought/was fighting off. A week or so later I first began to notice alarming visual phenomena.
Artificial lighting (florescent store lights, neon signs, computer screens, tv's) all began to have this strange blurring/shimmering effect, as if my eyes kept focusing, de-focusing, then focusing again. A static-like haze began to set in across my entire field of vision, as if I could actually see the machinations of the brain/nerve/eye system doing it's thing when I obviously shouldn't be able to. I began to have severe photophobia (sensitivity to light) and red, painful eyes. My balance/equilibrium would suddenly become totally altered, with my head feeling like it was "swimming", causing a sensation that I might pass out at any moment. My ears would begin ringing randomly, sometimes for minutes, other times for hours. Text on paper/computer screens/subway signs would bend and melt into itself, making it almost illegible unless I really strained to focus on it. Shooting nerve pain would radiate from my eyes and pierce into the center of my head then across my scalp. Finally, the headaches. Merciless aches where every blood vessel in my brain felt like it could burst at any second. I was terrified.
Within less than a month it had become noticeably worse. I could hardly get out of bed, and going out into sunlight was an excruciating and frustrating ordeal. I finally decided to see an ophthalmologist. After a series of tests which all came back normal, the eye doc said she could not find anything conclusively wrong, noting only a "low light accommodation level". She prescribed some b12 and atropine drops, and sent me home. I took the drops (which did nothing except give me crazy dreams due to the atropine) for two weeks while the symptoms persisted, worsening steadily. I went back, and the doctor again said my eyes were healthy, and that it's likely a neurological issue. She recommended I go home immediately, advice I reluctantly took (loved Japan, not so keen on my home country).
The ten months since I came home have been the most frustrating, terrifying period of my life. I've seen numerous doctors of varying specialties, gone through MRI's, CT scans, a lumbar puncture (I feel for anyone else who's had to do one of these), and countless eye exams-all coming back with a universal response of "inconclusive". Each doctor has said something in the manner of "Yes, there's definitely something wrong with you, but evidence sufficient to make a formal diagnosis is simply not there. Best of luck." It's been terribly disheartening. All the while the symptoms have gotten more & more intense, to the point now where I can't drive, have lost my job, and been forced to take 1 (soon to be 2) semesters off school. I'm totally at a loss guys and really, really scared.
The only thing close to a diagnosis I've found is from my current neurologist, who seemed/seems fairly sure it could be MS or NMO (Neuromyelitis Optica, rare-ish form of MS which concentrates on the spine & eyes, usually leading to blindness). However, the MRI he ordered came back showing no plaques or other irregularities, and he's now joined the "I'm really not sure, man" crowd. Everything from MS/NMO to Lyme disease, Behcet's, Lupus, "visual snow", and Neural Sarcoidosis has been tossed around as possible causes, but nobody has taken a definitive stance in my treatment.
I'm sorry if this got rant-ish and long-winded, I just don't have any close friends to speak with and don't have contact with my family, save for my grandparents, who are themselves very ill (they don't know about any of this stuff as it would just worry them). The notion of losing my sight or worse has been plaguing my mind almost constantly throughout this experience. I feel so past being burnt out that I just don't know what to do. I'm currently on a waiting list for admittance into the outpatient Neurology program at John Hopkins Medical Center, as that seems to be a sort of hub for research into rare/difficult to diagnose Neurological phenomena. If anyone has any resources/tips/advice they'd like to share, I'd really appreciate it.
Anyone who reads even a bit of this, it means a lot. Thanks for being a source of courage in knowing I'm not alone.