What I see where my vision is impaired - Macular Society

Macular Society

5,258 members2,602 posts

What I see where my vision is impaired

Alberni79 profile image
4 Replies

My name is Michael. I'm 43 years old. I was diagnosed with macular dystrophy several years ago. I was told that without some type of genetic test that it's difficult to know whether or not it is adult onset or Best's Disease. At that time, I had never heard of this condition. Previous visits to the optometrist never revealed any kind of condition and so I wondered if the flashing lights, distorted vision and kaleidoscope colors were somehow in my head. I had noticed that I had trouble recognizing faces quickly or often I couldn't discern what I was looking at although I can see quite clearly it is disturbed with all of this optical noise.In the darkness it often looks somewhat like fireworks repeatedly going off and with colors often violets and yellows. Other times it appears as a swirling kaleidoscope. It can be quite beautiful and mesmerizing at night when my eyes are closed, but I cannot turn it off.

I've tried to explain it to friends and family members, however it is difficult to describe and probably just as difficult for them to imagine. I would be very interested to talk to someone who has had the same experience as I have. Is there anyone out there who experiences what I have described?

Written by
Alberni79 profile image
Alberni79
To view profiles and participate in discussions please or .
Read more about...
4 Replies
springcross profile image
springcross

Hi Alberni79. I'm sorry to hear about your condition. I don't know anything about it but can quite imagine how unpleasant it is for you. I've given a link below on the condition from the RNIB here in the UK for you to read (it will be the CNIB in Canada but the two sites may not be the same) which you may already have read but it does mention genetic testing and counselling which you may find useful. There may be people on this forum who have the condition and can help with info when they see your post and also the Macular Society on 0300 3030 111 who could point you in the right direction. Good luck to you and I really hope you can get some help with this.

rnib.org.uk/your-eyes/eye-c....

Alberni79 profile image
Alberni79 in reply tospringcross

Thanks for replying! I'm learning to live with it, but as I understand, there is no treatment as of yet. Mostly I would just like to talk to someone who is exodus the same condition. Cheers!

iAdnanShah profile image
iAdnanShah

Get well soon.

First of all discuss this with your eye doctor, he can only explain what disease you have.

Most probably you're having retinal detachment, don't delay this and start your treatment as soon as possible.

Alberni79 profile image
Alberni79 in reply toiAdnanShah

I have spoken with him and I understand my condition. There is no treatment. It is not a detached retina.

Not what you're looking for?

You may also like...

High Street Optician versus Charity's Impaired Vision clinic.

I was due at the end of May to visit my regular High Street Optician. Instead, I took up the offer...

Distorted vision in one eye from Dry ARMD – feel like I am being fobbed off

Sorry if this so long but I am just at a loss to know wha to do. I was toldeverytime I had my...

Low Vision cannot get me the filter glasses that ophthalmologist told me I need for my dry md.

I can't find a board for this particular condition - sorry it is long. I was referred to low...

..pls help info for my brother

Hello, I am writing this email on behalf of my 36 yr old brother who has central serous...
pila123 profile image

Dry MD, Leaking Membrane & cataracts. How do you communicate with an eye doctor that fobs you off

Had an MD appt at eye hospital. I had had two cancelled MD appts and was very anxious as my vision...

Moderation team

See all

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.