Blind and Visually Impaired Community
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Is it fairly common to not have a diagnosis or cause f blindness while having observable retinal and macular damage? (self.Blind)
submitted by [deleted]
I have seen about 10 specialists and none have been able to diagnose me yet. I have observable circular lesions and scarring on my macula and am now legally blind from this. Its been over 3 months of this including a hospital stay and they told me that they honestly are out of ideas and are sending me off to yet another specialist. I'm only 28. This is so frustrating.
In the end, I guess I am just wondering whether any of you had sudden vision loss without ever getting a diagnosis other than a generalized "maculopathy" diagnosis.
In the end, I guess I am just wondering whether any of you had sudden vision loss without ever getting a diagnosis other than a generalized "maculopathy" diagnosis.
OldManOnFire 3 points 1y ago
It seems pretty common.
They *think* I have RP. But they're not sure. There's a type of lung cancer that causes your body to make antibodies to fight it but those antibodies sometimes attack the cells in your retina. Maybe it's that. They just don't know yet.
I'm still waiting on the results of the genetic test but they told me in advance the genetic pool of people with RP is small and there are hundreds of known types and presumable hundreds of unknown types. There's a good chance my genetic test will be inconclusive even if it is RP because there's so few genetic profiles to compare it to. If not knowing exactly what's wrong is this common with RP I assume it's probably common for maculopathy, too.
I have to admit it would be pretty cool having a rare disease named after me.
They *think* I have RP. But they're not sure. There's a type of lung cancer that causes your body to make antibodies to fight it but those antibodies sometimes attack the cells in your retina. Maybe it's that. They just don't know yet.
I'm still waiting on the results of the genetic test but they told me in advance the genetic pool of people with RP is small and there are hundreds of known types and presumable hundreds of unknown types. There's a good chance my genetic test will be inconclusive even if it is RP because there's so few genetic profiles to compare it to. If not knowing exactly what's wrong is this common with RP I assume it's probably common for maculopathy, too.
I have to admit it would be pretty cool having a rare disease named after me.
[deleted] [OP] 3 points 1y ago
I feel the same way about the disease haha I'm glad its more common than I understood to not have a "full" diagnosis. They think mine could be related to Bechets or maybe a rare infection, but they really don't know.
OldManOnFire 2 points 1y ago
How are you doing?
This is all very new to me. I was just declared legally blind two weeks ago so I still have a lot to learn. I'm lucky because I have an amazing, supportive wife. I imagine this would be hell for someone without the kind of help I take for granted.
The hardest part for me isn't not working. I thought it would be. So much of my identity revolved around being the dependable provider for my family and the dependable employee for my boss. I thought it would knock me into a tailspin when I lost the ability to do that, but it hasn't. What's been really hard for me to accept is knowing I'll never drive a car again. It seems silly, doesn't it? There's Uber and Lyft and I've got a couple teenagers at home who get a kick out of driving me anywhere I need to go. And we're just a few years away from autonomous cars, so logically I know I'm not missing out. There has probably never been a better time in history to go blind than right now, from a transportation standpoint. But knowing that doesn't stop the grieving. I'm never going to sit in the driver's seat again. The fact that I don't need to doesn't make it hurt any less.
What's been hard for you? What has surprised you the most about losing your vision?
This is all very new to me. I was just declared legally blind two weeks ago so I still have a lot to learn. I'm lucky because I have an amazing, supportive wife. I imagine this would be hell for someone without the kind of help I take for granted.
The hardest part for me isn't not working. I thought it would be. So much of my identity revolved around being the dependable provider for my family and the dependable employee for my boss. I thought it would knock me into a tailspin when I lost the ability to do that, but it hasn't. What's been really hard for me to accept is knowing I'll never drive a car again. It seems silly, doesn't it? There's Uber and Lyft and I've got a couple teenagers at home who get a kick out of driving me anywhere I need to go. And we're just a few years away from autonomous cars, so logically I know I'm not missing out. There has probably never been a better time in history to go blind than right now, from a transportation standpoint. But knowing that doesn't stop the grieving. I'm never going to sit in the driver's seat again. The fact that I don't need to doesn't make it hurt any less.
What's been hard for you? What has surprised you the most about losing your vision?
[deleted] [OP] 2 points 1y ago
Wow, we must have been told the same week that we were blind, what are the odds?
I absolutely empathize with the bit about driving. I feel that I've lost my dependence. Another thing we have in common is supportive wives! Also we don't have kids, I have my wife, her parents, my parents, and a wonderful friend group who can drive me places. It's just not the same though. I miss the solitude of a solo car ride.
The hardest part for me is the boredom. All of my life I've used vision as a primary means of pleasure. I did things like drawing, playing, video games, and doing crafty things. Now, now I just sit in bed trying to force myself to listen to audiobooks or get homework done.
Sorry you are going through this as well.
I absolutely empathize with the bit about driving. I feel that I've lost my dependence. Another thing we have in common is supportive wives! Also we don't have kids, I have my wife, her parents, my parents, and a wonderful friend group who can drive me places. It's just not the same though. I miss the solitude of a solo car ride.
The hardest part for me is the boredom. All of my life I've used vision as a primary means of pleasure. I did things like drawing, playing, video games, and doing crafty things. Now, now I just sit in bed trying to force myself to listen to audiobooks or get homework done.
Sorry you are going through this as well.
OldManOnFire 3 points 1y ago
Honestly, except for the driving part, I'm not sorry this happened to me. Maybe it just hasn't hit me yet but I really don't feel sorry about any of this.
I saw *Star Wars* in 1977 and I saw *Return of Skywalker* when it came out. How lucky is it that a Star Wars nerd like me would have enough years of good eyesight to see the entire 45 year saga in real time as it was released? My wife and I already hold hands when we dance at the 80s club. Going blind isn't going to stop us from dancing. My kids just bought a waterski boat so I can check that off my blind bucket list. The music I love is streaming at the command of my voice. We've got tickets to see Gary Numan in concert next month if the 'Rona virus allows it. I finished remodeling the house a few years ago. Our daughter's dog had puppies a couple weeks ago. And even though it feels like I'm looking through a straw with only a 5% - 10% field of vision remaining, I can still read my laptop and my phone.
Honestly, my life is pretty fucking good. The kids turned out good, the grandbabies are adorable, and the self isolation habits we learned during the pandemic prepared me for the isolation my blindness is causing.
And since I never had an ounce of fashion sense anyway, picking my clothes in the dark might actually make me look better dressed.
I guess I could focus on not driving and feel sorry for myself, but why would I want to? There's still a lot of life left for me to live and going blind isn't going to stop me from living it as fully and as happily as I can.
This turned into that speech from that guy everybody hates but I guess I needed to express it, or maybe to affirm it to myself. It feels a little wrong to feel so happy right now but I don't know how many more days of seeing I have left. I intend to make all the memories I can with them.
I hope you're doing well and making the best of the hand life dealt you. If you ever need to talk or anything I'm right here.
I saw *Star Wars* in 1977 and I saw *Return of Skywalker* when it came out. How lucky is it that a Star Wars nerd like me would have enough years of good eyesight to see the entire 45 year saga in real time as it was released? My wife and I already hold hands when we dance at the 80s club. Going blind isn't going to stop us from dancing. My kids just bought a waterski boat so I can check that off my blind bucket list. The music I love is streaming at the command of my voice. We've got tickets to see Gary Numan in concert next month if the 'Rona virus allows it. I finished remodeling the house a few years ago. Our daughter's dog had puppies a couple weeks ago. And even though it feels like I'm looking through a straw with only a 5% - 10% field of vision remaining, I can still read my laptop and my phone.
Honestly, my life is pretty fucking good. The kids turned out good, the grandbabies are adorable, and the self isolation habits we learned during the pandemic prepared me for the isolation my blindness is causing.
And since I never had an ounce of fashion sense anyway, picking my clothes in the dark might actually make me look better dressed.
I guess I could focus on not driving and feel sorry for myself, but why would I want to? There's still a lot of life left for me to live and going blind isn't going to stop me from living it as fully and as happily as I can.
This turned into that speech from that guy everybody hates but I guess I needed to express it, or maybe to affirm it to myself. It feels a little wrong to feel so happy right now but I don't know how many more days of seeing I have left. I intend to make all the memories I can with them.
I hope you're doing well and making the best of the hand life dealt you. If you ever need to talk or anything I'm right here.
SugarPie89 2 points 1y ago
Its not uncommon in general that doctors struggle to diagnose some patients. Hopefully they can figure out whats going on with you soon. Definitely try to get the best retina specilaists in your area to check you out. But if they cant figure it out maybe its cuz its not in your eye but rather something autoimmune for example or is a result of an issue somewhere else in the body.
[deleted] [OP] 1 points 1y ago
Thanks for the info. Yeah it's a bit weird. They tested me for autoimmune issues (even though I already have rheumatoid arthritis) and the tests were positive but then they ignored them.a
SugarPie89 1 points 1y ago
Strange that they would ignore that. I dont know that much about RA but I do know that rheumatism attacks different structures in the body so I guess it could be possible. Obviously Im no doctor but I would ask about it and ask for them to look into it if theres a chance it could be responsible.
Shadowwynd 2 points 1y ago
Yes, it is common. Many of clients have conditions where the doctors have just said something like "hmmm......no idea". We as a species can only diagnose a small fraction of the maladies, and only treat a small fraction of that.
[deleted] [OP] 1 points 1y ago
Oh wow that's crazy! Thank you for the information, that makes me feel much better about it.
EmotionalCable3373 1 points 1y ago
I don’t know if it’s common, but my optometrist kept telling me she doesn’t know what are those lesions on my retina.
I found out later that she was lying to my face: while I was preparing to go see a specialist out of state, I asked the secretary at my optometrist office to fax a copy of my last clinical exams to the other folks. She said the fax was down, so I asked for physical copies, which I got.
I was shocked by what I read. I was far away from imagining the diagnosis and the severity. And of course, I deeply resent my optometrist.
Bottom line is they may not know, or they may know but don’t want to tell you, for some reason. They do lie and withhold information, for sure.
I don’t know where you live, but I guess your best bet would be a teaching hospital. I went to the Moran at the University of Utah, and while you’re just another number with a boring, incurable disease, they have the latest technologies for diagnosing, imaging and sometimes medical trials.
Wishing you well.
I found out later that she was lying to my face: while I was preparing to go see a specialist out of state, I asked the secretary at my optometrist office to fax a copy of my last clinical exams to the other folks. She said the fax was down, so I asked for physical copies, which I got.
I was shocked by what I read. I was far away from imagining the diagnosis and the severity. And of course, I deeply resent my optometrist.
Bottom line is they may not know, or they may know but don’t want to tell you, for some reason. They do lie and withhold information, for sure.
I don’t know where you live, but I guess your best bet would be a teaching hospital. I went to the Moran at the University of Utah, and while you’re just another number with a boring, incurable disease, they have the latest technologies for diagnosing, imaging and sometimes medical trials.
Wishing you well.
[deleted] [OP] 1 points 1y ago
Wow thats so awful, I have felt exactly the same. I went to the "best" hospital in the country supposedly for this and they had a similar lack of communication. May I ask what they ended up diagnosing you with and what they held back as far as what the lesions were.
EmotionalCable3373 1 points 1y ago
In my case, the retinal lesions are areas of atrophy caused by degenerative myopia. They cause random blind spots in my visual field.
As far as what was held back, I can say ‘everything’, diagnosis, prognosis, etc.
I was told that they didn’t know what the lesions were. Worse, I was lied to when they said the blind spots are caused by floaters.
If I didn’t innocently ask for my clinical records, where everything was thoroughly documented (imaging, diagnosis, personal judgment), I would never have found out. Needless to say, it was a massive blow, both from the trust shattering and the discovery of the truth behind my symptoms.
Getting a copy of your records may be a good idea. Best of luck to you in your search for answers. Please keep us updated.
As far as what was held back, I can say ‘everything’, diagnosis, prognosis, etc.
I was told that they didn’t know what the lesions were. Worse, I was lied to when they said the blind spots are caused by floaters.
If I didn’t innocently ask for my clinical records, where everything was thoroughly documented (imaging, diagnosis, personal judgment), I would never have found out. Needless to say, it was a massive blow, both from the trust shattering and the discovery of the truth behind my symptoms.
Getting a copy of your records may be a good idea. Best of luck to you in your search for answers. Please keep us updated.
[deleted] [OP] 1 points 1y ago
Wow that is extremely incompetent of them. You would be able to sue them without question if you wanted. I had the exact same thing happen to me, minus the same diagnosis. Optometrist said I was fine and that the missing spots were floaters, but when I read the notes I had vitrous detachments and "maculopathy"
EmotionalCable3373 1 points 1y ago
I am amazed, and devastated, to hear that my story is not a single, unusual occurrence.
I am so sorry this happened to you too. I know all too well the crushing effect this experience can have, so disempowering, so unethical…
I am not a sue-happy person, but in that situation, I would completely go for it. The problem is that I can’t prove that I wasn’t informed. My optometrist can always hide behind her clinical notes, and pretend that she told and explained everything. It’s my word against hers.
I came to conclusion that the medical field is for most composed of rotten individuals. I am not even going into what the local ophthalmologist did to me. In my neck of the wood, they are incompetent, abusive and rude.
At the Moran in Salt Lake, I am an uninteresting number with an uninteresting diagnosis. But at least they are polite.
It is hard enough to go through life with blindness, no need to add to it a useless and lost-in-advance fight against people who are supposed to help you.
Surround yourself with allies, friends, advocates. You deserve that. I am on my own, not very educated, trying out to figure things, and it’s soul-crushing.
I am always here if you want to vent or complain or whatever. Peace, Dragon Tamer.
I am so sorry this happened to you too. I know all too well the crushing effect this experience can have, so disempowering, so unethical…
I am not a sue-happy person, but in that situation, I would completely go for it. The problem is that I can’t prove that I wasn’t informed. My optometrist can always hide behind her clinical notes, and pretend that she told and explained everything. It’s my word against hers.
I came to conclusion that the medical field is for most composed of rotten individuals. I am not even going into what the local ophthalmologist did to me. In my neck of the wood, they are incompetent, abusive and rude.
At the Moran in Salt Lake, I am an uninteresting number with an uninteresting diagnosis. But at least they are polite.
It is hard enough to go through life with blindness, no need to add to it a useless and lost-in-advance fight against people who are supposed to help you.
Surround yourself with allies, friends, advocates. You deserve that. I am on my own, not very educated, trying out to figure things, and it’s soul-crushing.
I am always here if you want to vent or complain or whatever. Peace, Dragon Tamer.
vip-sizzles 1 points 1y ago
I went 20+ years without a diagnosis. It wasn't until I saw a genetic specialist that Stargardts was mentioned & a $500 blood test confirmed it.
[deleted] [OP] 1 points 1y ago
Oh wow. So sorry that they didn't consider it sooner. That's very strange given how common it is among the blind!
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