Symptoms I have experienced as the time goes by

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  • #1401
    joeJoe
    Keymaster

    Hello everyone. In this topic I would like to talk about what symptoms we’ve experienced as time goes by, so we can give each other our perspectives as references and what to expect, around when.

    For me, I am currently 28, first diagnosed at 27 when I first noticed flashing dark spots which continuously appeared especially when I was in direct sunlight. Since then, I have noticed night blindness and occasionally there are instances where my color perception is off (I am also red/green colorblind).

    Apart from that, my normal vision has not visibly deteriorated yet due to BCD.

    Thank you for sharing.

    • This topic was modified 10 months ago by joeJoe.
    • This topic was modified 10 months ago by joeJoe.
    #1432
    gooddaygoodday
    Member

    Thank you for sharing your experience. My symptoms started with night blindness when I was 34. Quickly I started to see distorted lines which means straight lines become distorted. When I look at my window blinds I see waves instead of straight lines. Then my Right eye became blurry in two years. Right now both of my eyes are blurry. Sometimes I even see some Pupil size shiny gray light flashed in both of my eyes. I talked to my doctors and they had no idea what it is. Four years after my diagnosis, my central vision gradually became blurry. I had problems to differentiate colors between blue and green. Often times, I also seeThousands of tiny small shiny spots in both of my eyes. The amount of them fluctuates. When I am rested better the flashing tiny lights will reduce

    Do you guys have anything similar?

    BTW, i am using dictation and voiceover to type as i don’t see small text anymore. Sorry for the typos if any. 🙂

    #1433
    joeJoe
    Keymaster

    Ooh that is curious you mentioned the thousands of tiny small shiny spots. I have experienced something similar, but very few times (around 5). My vision everything will become sparkly and if I stay still and “in the zone” it continues to be that way. But if I move and wash my face or something I can get out of that state.

    #1434
    P01P01
    Participant

    My first BCD symptom began with night blindness in very dark environment when I was in my 20s. As time goes by, I have experienced blind spots in my visual fields. Meanwhile, my visual acuity and contrast sensitivity dropped. One thing I was very nervous about was walking the stairs because I could not see the edges of the stairs well, particularly when I walked down stairs. At the early phase of BCD, I was still able to do what a normal sighted person can do.

    Then as my vision continued to deteriorate, I could no longer read small font size on paper, and reading on normal white background computer screen became an exhausting task for me because my eyes because very sensitive to strong light. What I meant by strong light is not just outdoor strong sunlight, but also indoor light that is totally fine for people with normal vision. Then I had to use invert color function on computer and phone to read, together with the zoom function.

    After I turned 40, BCD disease progression went faster. Color vision impaired, visual acuity dropped very fast, and blind spots became bigger and distorted vision also became more obvious. I had to rely on VoiceOver to read because my eyes cannot read on computer screen for more than a few minutes (even with invert color and large zoom). I started to walk with a cane or my guide dog to cope with the changes in life.

     

    #1452
    gooddaygoodday
    Member

    You reminded me.  I forgot to mention that I am also sensitive to light. Even when I am inside, i will have to wear a pair of sunglasses. I have changed all the lighting in the house to be dimmer and warm. The fluorescent light is most hard for my eyes. Going shopping or meeting friends outside of the house have been hard, so I wear my sunglasses all the time. It’s really hard to try and see through sunglasses so then I bought other pairs light tinted yellow or orange. Those works better.

    #1453
    P01P01
    Participant

    Yes, photophobic is a very annoying symptom. Often I had to explain to people why I wore sunglasses when the light is not strong (to normal people). Otherwise, people think you are a weirdo or better yet, a celebrity:)

    #1531
    MiraMira
    Participant

    First signs of BCD in my early 30s was night blindness when in darker locations and fatigue in eyes after a long day in front of the computer.

    The most severe and difficult period was definitely when I was examined and finally diagnosed, because my mental state had to catch up with what was going on. I don’t think – as such – there were a tremendous amount of symptoms in that period but the fact that I became aware of them was a crazy time;

    – Night blindness

    – Failure of colour perception within bright / dark / cold tones / warm tone colours

    – Losing contrast vision; difficult to recognise people, difficult to see stairs (especially going down)

    – Tunnel vision narrowing in

    – Blurry central vision

    – hyper sensitive eyes in sharp light (sun / spotlights etc)

    – migraine and sometimes a kind of headache behind my eyes

    – those weird floaters, small peanut shaped bright dots, appearing both with my eyes open and closed

    – …. and I probably forgot some of the symptoms🤷🏽‍♀️

    So quite similar symptoms as the rest of you has experienced. Now at the age of 43 my vision is blurred and a mess, however I am still able to get around in well-known places, without assistance. In the dark I am completely blind. For the past 5 years it has been a slow but degenerating process.
    //Mira

    #1562
    the_35th_owlthe_35th_owl
    Participant

    My timeline:

    Before teens: occasional small red spots at the center of vision in both eyes, “tides” of different colors. Both noticeable only when it’s dark or when I close my eyes. Night blindness.

    From about 10: floaters in both eyes.

    15: went to see an ophthalmologist. Diagnosed as “macular degeneration”.

    28: started having small blind spots around the center in my left eye.  I started having small blurred areas at the center of my right eye.

    30: Vision loss in my right eye. Pain in both eyes. Photophobia.

    Continuous vision loss in both eyes since then.

    32: Sudden increment of floaters.

    39: Occasional flashes in both eyes. Blackout when standing up.  whole eyesight covered with a light blue “cloud”.

    41: Legally blind.

    42 (current): very limited central vision.  All symptoms mentioned above. Severe pain in both eyes.

    #1564
    P01P01
    Participant

    The_35th_owl: Sounds like that your case is another paediatric case of BCD given when you noticed the first symptoms. There has been published reports of BCD paediatric cases. See “BCD Paediatric Cases” of this forum.

    #1566
    MiukieMiukie
    Participant

    Thank you all for sharing all these experiences via this forum.  Now I have better understanding how it BCD vision is like as currently my fiancé doesn’t share with me on his experiences because he is still in denial mode.

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