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agraffia (@agraffia)

Visual Snow: Anyone experience this?

Eye Conditions | Last Active: 2 days ago | Replies (82)

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@grace02

Hi. My daughter, Grace, is 11. She got diagnosed with Hashimoto this summer, after having the seeing dots 24/7 symptom, about 2 months earlier. She still has the dots full time, but does not see them in outdoor lighting, unless it is dark. She sees full time in the indoor lighting. I am feeling hopeless today about the dots. We are working with a chiropractor and nutritionist. We have gotten rid of the dizziness, nausea, and leg pain symptoms. So that is really hopeful. I would love to connect with the mom that wrote about her 12 year old (at the time) daughter who has Hashimoto w/dots. I would ask, what is helping now? Recommendations? We are on the AIP diet and trying the natural route for now, mainly because Grace is functioning through the dots. Any chance your daughter would be interested in a fellow dot seeing pen pal? My daughter often feels alone with this. Thanks. Melissa

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Replies to "Hi. My daughter, Grace, is 11. She got diagnosed with Hashimoto this summer, after having the..."

Hi, Melissa,
How is your daughter doing? was her vision snow gone?
She started have leg/knee pain at night, every day, half year ago, and lasted for three and half months. We saw 10s specialists and can’t be diagnosed. Finally, the leg/knee pain gone. She complained about floaters and flash light a month before leg/knee pain. She saw several eye specialists and eye is normal. She complains that she can see lots a small dots on the subject, and dots are getting big. We already see all kinds of specialists, and run out of choice. Hope you or someone can share their experience. Thanks, Bintuan

@grace02 Hi, Melissa. I have had spots in my eyes since about age 8 or 9. No one could diagnose, until just the last few years. We believe now that my hATTRwt (primary systemic inherited Transthyretin wild type Amyloidosis) is to blame. It gets into various tissues around the body, including the layers of the eyes (cornea, iris, etc) and causes problems. It usually does not show itself until later years, but can show up in early teens or before. Mine showed up around age 8, but did not grow rapidly. Now it is all over my body, but I am 77. It is a protein misfolding disorder, and will take an outfit like Mayo-MN or Mass General, Sloan Kettering or Fred Hutchinson to diagnose it. But you can start with a simple blood test, SERUM FreeLite@ chain assay from Bindings UK. At her age, any reading above 1.0 should be a warning. My eyes are still going worse, but very slowly. For a time in my early 20s I could hardly see to drive because of the spots in my eyes.

Welcome to Connect, @bintuan
I’m sorry that your daughter hasn’t found answers to her vision issues. Is she still in school?

Yes. She is in school. How is vision snow research going? any good news?

Here are some articles about Visual Snow Syndrome and related research
– NIH Genetic and Rare Disease Information Center https://rarediseases.info.nih.gov/diseases/12062/visual-snow-syndrome
– PubMed search https://www.ncbi.nlm.nih.gov/pubmed/?term=%22visual+snow%22

This 2018 article “Visual snow syndrome: what we know so far.” https://www.ncbi.nlm.nih.gov/pubmed/29140814 looks like it would be interesting, but you have to purchase the paper to read it (paywall).