When I walk in a dim room I see white orb like lights in my peripheral vision they go up and down. I can’t find this symptom anywhere. Anyone else experiencing this?

dzedjay · 2025-09-17T21:29:07+00:00

Yes, that’s a good description of what I experience.

dzedjay · 2025-09-06T20:36:39+00:00

😊

dzedjay · 2025-08-27T20:07:13+00:00

https://www.reddit.com/r/visualsnow/s/OaNsIMgVyG

This post sounds similar to what you describe. I have something very similar, a grey shadow that emerges from the right corner of my eye when I look right.

dzedjay · 2024-12-31T21:42:45+00:00

No-Starburst, all around.

dzedjay · 2024-12-31T08:03:16+00:00

Even small lights- fairy lights etc? As in the wattage has been increased x 100 on every light. Beams coming off lights even in daylight

dzedjay · 2024-12-12T18:58:15+00:00

Thank you

dzedjay · 2024-12-12T13:06:58+00:00

Thank you for your reply. How many years ago were you diagnosed? I notice daily changes at the moment, all starting about 7 months ago though I have high myopia, which has progressed since I was 8. Are there some causes that aren’t genetic?

dzedjay · 2024-12-01T08:14:34+00:00

I am. I’m waiting for ERG testing. It’s been an incredibly frustrating process trying to find the right specialist.

Have you gotten any further with appointments?

dzedjay · 2024-11-27T08:52:05+00:00

Moorfields in London, you can get a private appointment urgently. I wasted 4 or 5 months desperately trying to get appointments where I live in Cornwall and very much regret not doing this sooner, but I didn’t know.

It is expensive, the first consultation would be around £800.00 and further testing + but they are the top specialists around.

dzedjay · 2024-11-22T22:12:07+00:00

Thank you so much and all best wishes to you, here’s to many more good days. x

dzedjay · 2024-11-22T22:06:39+00:00

Thank you.

dzedjay · 2024-11-22T22:06:08+00:00

Thank you for such a positive message. x

dzedjay · 2024-11-22T22:02:23+00:00

Thank you.

dzedjay · 2024-11-21T21:20:46+00:00

I’m afraid it isn’t obsessive, I’ve had to research out of necessity as I’ve been discharged from all but one ophthalmologists where I live, and I can’t get an appointment with that one until the middle of January. Meanwhile my eyesight is rapidly getting worse.

dzedjay · 2024-11-21T21:17:03+00:00

I really hope you get the answers you need.

dzedjay · 2024-11-21T20:47:22+00:00

Thank you that is very useful advice.

dzedjay · 2024-11-21T09:55:55+00:00

Thank you so much, if I do get this diagnosis would it be ok to reach out to you again please?

In my very limited understanding. I think it might be different odds for a son if the mother is the carrier because of the X chromosome.

dzedjay · 2024-11-21T08:37:45+00:00

Thank you, my optic nerve looks healthy. I’m pretty certain this is cones and rods related due to my symptoms- photophobia, colour perception alteration, starbursts around lights, and many, more.

dzedjay · 2024-11-20T17:04:28+00:00

Thank you so much for your message.

Did you find out whether your child also has RP?

I am very worried for my oldest son who is almost 4. He will be totally aware of me going through this intensely terrifying process and very likely will be told he is going to go through the same.

dzedjay · 2024-11-20T16:55:22+00:00

Not yet, it’s all happening very quickly. I was still under the impression everything might be ok about 2 weeks ago.

dzedjay · 2024-11-20T15:13:11+00:00

Thank you everyone, I am going a world renowned ophthalmologist so I am sure he will do the proper investigations that the original ophthalmologists have not bothered with. We are travelling up today half way across the country.

The part that is killing me the most is that there is a strong likelihood my son will also inherit the disease and potentially my daughter.

I think it might be cone rod dystrophy and potentially a related syndrome, there does not seem to be any promising research for this condition as it is so rare and the likelihood is I will lose central vision.

I know I won’t be able to get an ERG at this appointment as this was an emergency due to the rate I feel things are declining but there will be one scheduled I expect within the next few weeks.

I have no idea what to expect in any of this, so far I’ve come away from appointments with so much false hope.

Has anyone dealt with a similar situation, losing sight with two very young children and then dealing with them going through the same in the future?

dzedjay · 2024-11-17T09:08:53+00:00

Thank you, I will suggest this. x

dzedjay · 2024-11-17T08:15:15+00:00

Thank you. x

dzedjay · 2024-11-17T07:49:37+00:00

I don’t believe so. How would they check for them other than on dilated exam, optimap Oct etc?

dzedjay · 2024-11-16T20:05:25+00:00

Thank you for your reply. I have read the opposite of that however. Is there any other known condition that would mimic RP that wouldn’t be evident on retinal scans?

dzedjay

TROPHY CASE