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Avatar universal

Why visual snow?

My 19 year old daughter had a sudden onset of visual snow and floaters while studying.  She was not stressed, does not drink or smok,do drugs, nothing.  She has seen ophthamologist, neuro-ophthamologist and retinal specialist who all have said her eyes are healthy with the exception of a B-scan which showed optic nerve drusen, but then the buck stopped.  We will be seeing second neuro soon for hopefully further testing (first one ordered MRI and since it was normal, could not help her).  Standard bloodwork was normal including thyroid, but low vitamin D.  Any idea where to go or who to consult with or any hope from the Neurology community that research is being done on this crippling disorder, which I understand afflicts thousands worldwide (who are misdiagnosed because all tests are normal), and gets worse over time?  How are sufferers expected to maintain a job that requires long term computer use, reading and driving to/from job, let alone the fact that quality of life is gone!  It seems to be a neurological disorder because the physical eye is normal.  Please help with any thoughts or direction.  Thank you.
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Avatar universal
I will be interested in the replies you get.  While I don't have "snow", my vision suddenly went blurry, one day (was 20/15 up to that day), along with a host of troubling symptoms which lasted months.  Most of my other symptoms have diminished dramatically over the past 2 months, but I'm left with the blurry vision, headaches & head pressure, nausea, and just generally not being myself.  

All my tests have come back normal, esp. given that I am super-healthy otherwise.  (Very healthy diet, daily exercise, positive outlook, etc.)  

My more severe symptoms only return with visual tasks, such as driving or playing a lengthy game on my iPad.  I get uncomfortable symptoms watching a movie, or even attending a seminar (watching an on-screen presentation) or going to the opera.

As I said...seems to be linked to visual tasks.

Can't find a doctor who even takes my concerns seriously.  

The neurologist I saw was incompetent, and completely dismissed my medical history and account of symptoms, immediately deciding that I'm nervous about driving (I most decidedly am not, in fact, quite eager to get back to driving...something I love), and my symptoms are due to "tension".  (No, I wasn't "tense" when this all began, while sitting quietly on my couch.  I'm also not "tense" watching movies, the opera, or playing solitaire.  Similarly, my heart rate, BP, and general demeanour tend to confirm my laid-back nature.)  (After my appointment, I read numerous online patient complaints about this doctor, echoing similar concerns.  It seems he has misdiagnosed many patients; his standard diagnosis is "stress"...even those who are subsequently diagnosed with MS or spinal compression or a host of other diagnosable ailments.)

I've been told outright that I should just accept it.  The trouble with that is, I don't live a walking lifestyle.  I own an island, for example, which s a 7hr drive from my home.  My husband would sure like to be able to DO things, again, without me almost blacking out, having pains, pressure, nausea, tingling scalp, etc.  I've spent hundreds (maybe thousands) in grocery delivery charges and taxis since my symptoms began (and prevented me from being able to do the simplest errands on my own).

It's not a small thing to no longer live a normal life...to give up things you normally do, and love.  And while I can accept that, if I have a medical condition that necessitates giving up those things, I'd sure like to know what that medical condition is, and if anything can be done to make it better.

I don't even want to know the kind of person who'd just accept all those restrictions without any kind of answer or rational insight into what's causing it.

Best of luck to you and your daughter.
Avatar universal
Thank you for your comment.  I wouldn't hold your breath for any medical responses here, as I clearly see the medical community, specifically Neurology, hasn't bothered to take the slightest interest, and they should, considering this disease (and I say disease because symptoms worsen over time) is neurological because the physical eye in most cases I have read, are healthy.  I don't care if MRI's are coming back negative, there is something going on in the brain, and I am just beside myself at the lack of interest in finding a cause and eventual cure.  My daugther had a few hours of no visual disturbances, which could mean this is reversible (or reversible if caught early).  My daughter did have a migraine with aura (diagnosed by hospital) three years ago, so it's safe to assume this persistent aura she has is migraine related.  Oh, but they have remedies, treatments and preventions of migraines, just nothing for the sufferers of the persistent aura that's 24/7.  We are seeing a neurologist in the U.S. who has a seen patients of PMA and knows of this disease, for a complete neurological workup (something we have not had at all), in hope of finding a reason for this recent PMA.   He hasn't promised a cure, just a complete workup, and I guess that is better than nothing.  Wish us luck, and in turn, I hope you find an answer to your disease soon.  It ***** and it isn't fair to be ignored by the medical community.
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