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agraffia (@agraffia)

Visual Snow: Anyone experience this?

Eye Conditions | Last Active: Mar 18, 2020 | Replies (77)

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@mommaj

I’ve had this since early childhood – as long as I can remember. It’s getting worse with age. (I’m 46.)

It wasn’t until my 20s when I realized it wasn’t normal. Then the eye doctors I asked had no clue what I was talking about. Only yesterday did I find a name for it. Here I had begun to believe I was the ONLY one — so glad there are others!

There doesn’t seem to be a cure at this time, or even much in the way of research. I have read there seems to be a connection with auto-immune disorders, particularly Lupus. I have several symptoms of Lupus including butterfly rash and positive ANA, but it doesn’t seem doctors want to diagnose it without kidney damage. (Which makes no sense to me.)

Have you had much bloodwork done on your daughter?

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Replies to "I've had this since early childhood - as long as I can remember. It's getting worse..."

Hi. My daughter is now 15 and we know she does have Hashimotos Disease which is an auto immune disorder. Apparently it’s now known that a side by product of hashimotos is the visual snow. She has received some relief from taking topomax. This was prescribed by her neurologist. Hope this helps.

I wanted to thank you for following up and posting this. How is your daughter doing? My 10 year old son has been experiencing visual snow in the mornings the last few weeks. We’ve been convinced he has a autoimmune condition of some kind for several years now, but haven’t been able to find any positive antibodies.

Hi @pollyetal
What symptoms or indications lead you to believe that your son has an autoimmune condition?
You may be interested in the discussions in the Autoimmune Disorders group as well: https://connect.mayoclinic.org/group/autoimmune-diseases/

Is he still experiencing visual snow?

Hi. I am just stumbling on to this. My 16 year old suffers from visual snow as well and we live in the chicagoland area. We have had tests done. Her vision is 20/20. Please let me know if you have had any more luck with research and doctors. Thank you

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