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harangatang
12-29-2006, 12:39 AM
My sister who is in college has been diagnosed with visual snow after going to many doctors (many had no clue what it was). She was told by the doctors at University Hospital in Cincinnati that there is no cure for this disease. Apparently it is a rare disease and the causes or treatments are not known. I am helping her and my parents in the fight against it and so far our ideas are to contact the Mayo Clinic and Cleveland Clinic to find some treatment for it, even if it is experimental. We have also thought about the possibility that there may be something in Europe that hasn't been approved by the FDA, but some Yahoo searches in the UK finds nothing. We are sure of the diagnosis and at least according to Wikipedia there are some medications which may or may not work. I doubt there are many doctors on here but I was wondering if someone on here or someone that you know have had an off-the-wall disease and found treatment for it. Thanks alot for your help.

Harangatang

TeamBoone
12-29-2006, 01:02 AM
Could you please define visual snow? Is it slow/fast developing? Is it life threatening or a condition that can be lived with?

Though I'm not a doctor, the largest part of my career was spent in the field of clinical research in the U.S. and Europe so I'm at least familar with alot of diseases/conditions.... I've never heard of this one.

Regardless, your sister is in my prayers.

harangatang
12-29-2006, 01:18 AM
Could you please define visual snow? Is it slow/fast developing? Is it life threatening or a condition that can be lived with?

Though I'm not a doctor, the largest part of my career was spent in the field of clinical research in the U.S. and Europe so I'm at least familar with alot of diseases/conditions.... I've never heard of this one.

Regardless, your sister is in my prayers.
Well first off the visual snow is like seeing a static TV screen constantly. She has had it for her entire life (some cases have been reported in relation with drug use) and after trips to the normal eye doctor we gave up (they said there was nothing wrong with her eyes). The condition is not life threatening or threatening to her eyes but it's something they said will never go away on it's own. She can live with it but as you can see in the simulation it is very annoying.

Thanks for your prayers, we greatly appreciate it.


A simulution of it can be found here:
http://www.visionsimulations.com/index.php?option=com_content&task=view&id=78&Itemid=171#

An overview:
http://en.wikipedia.org/wiki/Visual_snow



Harangatang

Cyclone792
12-29-2006, 01:36 AM
There's an Internet discussion forum out there on Visual Snow, and there's a sticky post for things that have helped (http://p210.ezboard.com/Things-that-have-helped-/fthosewithvisualsnowfrm1.showMessage?topicID=1940. topic) posted on that forum. If you haven't checked it out, there may be something worthwhile posted over on that forum.

What's her vision in each eye (i.e. 20/20 or something else), and does she have visual snow in both eyes or just one eye?

harangatang
12-29-2006, 01:58 AM
There's an Internet discussion forum out there on Visual Snow, and there's a sticky post for things that have helped (http://p210.ezboard.com/Things-that-have-helped-/fthosewithvisualsnowfrm1.showMessage?topicID=1940. topic) posted on that forum. If you haven't checked it out, there may be something worthwhile posted over on that forum.

What's her vision in each eye (i.e. 20/20 or something else), and does she have visual snow in both eyes or just one eye?She has it in both eyes and I don't know her vision but she has had glasses/contacts since she was little (she's in bed and I don't want to wake her). I looked on the bookmarks page as she has posted on a message board for visual snow which is the same one from which you posted. I'll pass along the info to her, but I would think she has at least probably read it.

Harangatang

Cyclone792
12-29-2006, 02:30 AM
She has it in both eyes and I don't know her vision but she has had glasses/contacts since she was little (she's in bed and I don't want to wake her). I looked on the bookmarks page as she has posted on a message board for visual snow which is the same one from which you posted. I'll pass along the info to her, but I would think she has at least probably read it.

Harangatang

I had never actually heard of visual snow until you posted about it, but it's interesting and very unfortunate that your sister is going through all of this. I looked at those simulations you posted, and I can't say that would be an enjoyable experience to be going through all the time. From what very little I've read, it seems that some people believe there's a medical connection while others believe there's a psychiatric connection.

I've experienced a number of odd phenomena in the past, such as sleep paralysis, panic attacks, and a fear of flying, and I eventually figured out simple remedies or behavioral changes to eliminate or greatly reduce the effect of all three of those things. The trick I used was just testing out a variety of things until I figured out something that seemed to work, which would range from drinking more water to relaxation techniques. I wouldn't resort to taking a bunch of random medication or anything of that nature, but if there was a remedy without any potential unhealthy side-effects, I was game for trying it.

harangatang
12-29-2006, 02:53 AM
I had never actually heard of visual snow until you posted about it, but it's interesting and very unfortunate that your sister is going through all of this. I looked at those simulations you posted, and I can't say that would be an enjoyable experience to be going through all the time. From what very little I've read, it seems that some people believe there's a medical connection while others believe there's a psychiatric connection.

I've experienced a number of odd phenomena in the past, such as sleep paralysis, panic attacks, and a fear of flying, and I eventually figured out simple remedies or behavioral changes to eliminate or greatly reduce the effect of all three of those things. The trick I used was just testing out a variety of things until I figured out something that seemed to work, which would range from drinking more water to relaxation techniques. I wouldn't resort to taking a bunch of random medication or anything of that nature, but if there was a remedy without any potential unhealthy side-effects, I was game for trying it.In her case it seems that no matter what she has done throughout her life it has persisted. I got the impression after reading that particular thread that just randomly trying medications wasn't the best idea. But, I'm glad that there is a place where she can talk to people who are experiencing the same problems because our family and pretty much every doctor except the latest one has no idea (other than through the simulation) of what she is going through. The biggest problem with it the fact that no one knows what it comes from and it becomes very frustrating in seeing so many points that are just theory. Hopefully we can find another doctor who knows more about it as it is becoming very frustrating for not only her, but for all of the rest of our familly too.

Harangatang