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"Tentative" MS/NMO Diagnosis with worsening symptoms

Hi Everyone,

Firstly, I just wanted to thank the community here as a whole, specifically the ocular/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), terrible headaches, and red, painful eyes. My balance would suddenly be completely off, 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. I was terrified.

Within less than a month it has become noticeably worse. I could hardly get out of bed, and going out into sunlight was an excruciating and frustrating ordeal. I decided to see an ophthalmologist. After doing a series of tests, the doctor 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 they told me my eyes were healthy, that it's likely a neurological issue. They 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 has been the most frustrating, terrifying period of my life. I've seen numerous doctors of varying specialties, gone through MRI's and 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 along the lines of "yeah, 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" group. Everything from MS/NMO to Lyme disease, Behcet's, "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.

Thanks to anyone who reads even a bit of this, and again thanks for being a source of courage in the sense of knowing I'm not alone.

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replied January 12th, 2014
Hello, thank you for consulting e health forum. No matter how complex our brains or organs are they get broken or might get broken only in the limited number of ways. Any kind of episodic visual phenomena happening simultaneously in both eyes automatically rule out the disease of the eyes. Your visual phenomena are heavily intermixed with other symptoms which anatomically can not be connected to the same area. Your visual symptoms are "positive" meaning they are not the loss of function but rather visual phenomena on the top of the vision. This type of thing can happen in epilepsy. The problem with epilepsy is the fact that; no matter how bizarre the symptoms are they are stereotypical in each particular person. This is not your case. The only condition that may unite the majority of your symptoms is a migraine. People with migraine are usually more concerned about headache however and I don't think it is your major problem either. I think you have an anxiety and/or depression as a major problem, especially considering negative work up on multiple occasions and lack if any loss of function. By Andre Strizhak

Providing Top Neurology Services in the New York area. Excellence in treating headaches, dizziness, and head pain.
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