Blind and Visually Impaired Community
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A little update and my fear... (self.Blind)
submitted by fjakacrossing
I posted a few days ago about being surprised by "macular changes" at my yearly eye exam. Well, I saw the retinal specialist, and their imaging confirmed that there's damage to the layer with the rods and cones in both my eyes. The doctor said he'd need to refer me to the macular sub-specialist. He listed the possible causes: medication (but I'm not on any of the usual suspects), genetic (but I don't have a family history that I know of), or some kind of injury from a laser or the eclipse (but I certainly haven't stared at either). I know he was probably just doing due diligence, but I'm petrified that he thinks I've done this myself by doing something stupid like staring at the sun, and I don't know what to expect at all. Has anyone else with a macular condition ever been asked (I have to remind myself that it wasn't an accusation) if they'd had contact with a laser/the eclipse?
brumeloss 4 points 2y ago
Just because none of your family members have eye issues, doesn't mean you wont. Genetic mutations happen at conception and as we age. I lost my central vision because my cones started to become damaged. They suspect it is genetic. I have completed a generic test and am awaiting the results. Just keep in mind that genetics is still a potential cause.
fjakacrossing [OP] 1 points 2y ago
If you don't mind me asking, did they ask you if you'd looked at a laser when you were first getting diagnosed? To be completely honest, I have OCD and a terrible fear of being seen as a "faker" or something, and I'm worried they asked that because they think I did this to myself.
brumeloss 2 points 2y ago
No, I've never heard of such non sense. It may be true but I would strongly get a second opinion.
fjakacrossing [OP] 1 points 2y ago
To be fair, he just listed it as one possible idea and I've just latched onto it, LOL. I'm hoping it's just a normal question in the work-up for something like this, as my damage was pretty localized as far as I could tell on the scan.
viciousSnowFlake 3 points 2y ago
I went to a retinal specialist a few months ago, had scans done along with a dna test. He spoke with another doctor at the practice and had him look at the scans. The second doctor said it looked like damage from a laser. Genetic test came back and I have cone rod distrophy. Would prefer that it was from a laser because then it would be isolated to a single eye.
fjakacrossing [OP] 1 points 2y ago
Ah, geez. I haven't had any genetic tests done yet, so I guess time will tell on that one too. Then again there's variants that haven't even been IDed yet, so maybe it won't either! Agree, though – I'd rather it be something non-progressive or even treatable, but I'd also rather know it wasn't than get sent away with a wrong diagnosis, you know?
viciousSnowFlake 2 points 2y ago
Oh yeah, I understand that feeling. Being stuck in limbo without an actual/correct diagnosis is rough (I waited two months for the dna test to come back). You should ask the doctor about the testing or just have it done yourself. There are services out there that have tests specifically for retinal diseases and have genetic counselors that can go over the results with with
fjakacrossing [OP] 2 points 2y ago
When I see this new specialist I'll definitely ask if she doesn't offer it herself. I also see online (I'm no doctor) that many of the dystrophies don't have an identifiable underlying genetic cause, so I guess I'm hopeful my doctor is open to that possibility. Because I KNOW there's no way I eclipsed/lasered my eye into a gradually-growing blind spot without knowing, LOL. Don't want it to progress, but wanna be taken seriously if it does.
KillerLag 1 points 2y ago
Such damage from a laser is possible, so they have to ask. Most people would usually remember a bright laser in their eyes. However, in some extremely rare cases, people can get their eyes damaged from an Infrared laser, which is invisible (CD readers use IR lasers, but at low level, so generally pretty safe). I've only ever encountered such things as science labs, though.
As for staring at an eclipse/the sun, I actually had a client who lost vision from staring at the sun. Due to some unusual medical beliefs, he was under the impression that staring at the sun would cure his minor vision loss. It.... did not.
Welding arcs are also a possible, for bright lights that can cause damage to the eyes. Although that is usually very specific and work related, so most people would already have gotten the safety training before doing that kind of work.
As for staring at an eclipse/the sun, I actually had a client who lost vision from staring at the sun. Due to some unusual medical beliefs, he was under the impression that staring at the sun would cure his minor vision loss. It.... did not.
Welding arcs are also a possible, for bright lights that can cause damage to the eyes. Although that is usually very specific and work related, so most people would already have gotten the safety training before doing that kind of work.
fjakacrossing [OP] 1 points 2y ago
Oh, I'm sure people can hurt their eyes with the eclipse and stuff! I'm just not sold that I could've done it without knowing. And though I'm out of work at the moment, I was in the education field...so not a whole lot of contact with high-powered lasers or welding equipment! Appreciate you sharing your perspective on things.
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