Blind and Visually Impaired Community
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Struggling With no diagnosis (self.Blind)
submitted by Derpette4220
I'm twenty-two and severely visually impaired. My acuity tests at twenty over two hundred in the left eye, and twenty over four hundred in the right. I experience night blindness, photophobia, headaches, nausea, and fluctuating visual clarity. Some days I can't see faces or read at all, some days I find myself picking words off of packaging while my fiance pulls me around the grocery store.
I received my first pair of glasses at 5, after I was accused of lying on an in-school visual ability test.
In my adolescence I visited Saint Paul's Hospital in Vancouver, BC. I was diagnosed with "a flick" or poor visual tracking of moving objects.
At 16 I tested for a Learners license, and the overseer was careless with the vision test and gave me the license. I'm sure I only had one line on the chart.
This year I finally learned how poor my acuity really is, no eye doctor had ever provided me or my parents with that information before. I hadn't gone blind, but it felt that way.
I still don't have a diagnosis, the last ophthalmologist I saw said "I know what it is!" Before mumbling "Ah, shit, that one's only in boys." I'm a girl, hi.
I wonder if it's CVI, I've been garaunteed it isn't Stargardt's.
When were you diagnosed? How many doctors did you see before it happened?
It's really hard to stay positive. My local government is refusing to provide large font forms for our city council election. I constantly feel lesser due to inability. I don't have much of a social life, and a local doctor shortage has me waiting, unemployable, to get Persons With Disabilities status.
Any advice, well wishes, or stories are hugely appreciated.
I received my first pair of glasses at 5, after I was accused of lying on an in-school visual ability test.
In my adolescence I visited Saint Paul's Hospital in Vancouver, BC. I was diagnosed with "a flick" or poor visual tracking of moving objects.
At 16 I tested for a Learners license, and the overseer was careless with the vision test and gave me the license. I'm sure I only had one line on the chart.
This year I finally learned how poor my acuity really is, no eye doctor had ever provided me or my parents with that information before. I hadn't gone blind, but it felt that way.
I still don't have a diagnosis, the last ophthalmologist I saw said "I know what it is!" Before mumbling "Ah, shit, that one's only in boys." I'm a girl, hi.
I wonder if it's CVI, I've been garaunteed it isn't Stargardt's.
When were you diagnosed? How many doctors did you see before it happened?
It's really hard to stay positive. My local government is refusing to provide large font forms for our city council election. I constantly feel lesser due to inability. I don't have much of a social life, and a local doctor shortage has me waiting, unemployable, to get Persons With Disabilities status.
Any advice, well wishes, or stories are hugely appreciated.
RogueCandyKane 6 points 4y ago
Has Usher Syndrome been considered?
Usher comes with balance issues as it also impacts hearing. Usher 3 type doesn’t affect hearing until later in life (type 1 and 2 have hearing loss from birh)
Usher causes nightblindness, photophobia and causes peripheral vision to be lost first generally - it’s retinitis pigmentosa.
Have you had genetic testing? There are new mutations be img discovered all the time and many people have unique mutations
Good luck with getting some answers.
Usher comes with balance issues as it also impacts hearing. Usher 3 type doesn’t affect hearing until later in life (type 1 and 2 have hearing loss from birh)
Usher causes nightblindness, photophobia and causes peripheral vision to be lost first generally - it’s retinitis pigmentosa.
Have you had genetic testing? There are new mutations be img discovered all the time and many people have unique mutations
Good luck with getting some answers.
Derpette4220 [OP] 2 points 4y ago
My main area of issue is central vision. An atrophy has been observed on the macula, but it doesn't appear to be macular degeneration. RP definitely isn't it, I have my best light perception around the periphery.
I've never been referred for genetic testing. I have no apparent hearing issues or developmental defects otherwise.
My father and paternal grandmother both have scoliosis, most doctors say that wouldn't be relevant.
I've never been referred for genetic testing. I have no apparent hearing issues or developmental defects otherwise.
My father and paternal grandmother both have scoliosis, most doctors say that wouldn't be relevant.
RogueCandyKane 2 points 4y ago
I’ll listen our for anything that sounds like that. I was diagnosed with a Usher until I was 23 - I just thought it was normal to be night blind, be clusmsy, not see stuff at all. Getting a diagnosis, although life changing, it gave me something to work with and also find others with the same condition.
I’d definitely recommend looking at genetic testing. Good luck
I’d definitely recommend looking at genetic testing. Good luck
pokersnek 4 points 4y ago
So, to start off, I an a Certified Orientation and Mobility Specialist in the US. I teach cane use and travel skills to kids who are blind.
I know that a diagnosis might be something you desire, and I know that answers are important. Continue working with your doctors on that. Get pushy. Demand to see specialists. I think it’s terrible that you didn’t know your acuity numbers. That’s one of the first things I look at with a student, along with field deficits and visual functionality.
I would like to suggest that you seek out organizations that can help you gain skills so that you can be empowered to do things for yourself. You said something along the lines that you are pulled along through the grocery store, that you can’t access standard size print. There is training and technology that can help with that. I did a quick google search for the Vancouver area and found this organization http://www.cnib.ca/en/Pages/default.aspx If they can’t provide services for you, then they may know somewhere that can. They may know of or have specialists on staff to help get you answers as well.
I know that in the US, we have the National Federation of the Blind (NFB), the American Foundation for the Blind (AFB), The Lions Club, Lighthouse organizations, and at least a dozen other organizations dedicated toward working for people who are Blind. By American standards, you are legally blind and would be entitled to disability monies and rehabilitation services. You would have qualified for educational services as a child as well. I know it works similarly but different in Canada.
I’m not sure if I can help more, but send me any questions and I’ll see what I can do.
I know that a diagnosis might be something you desire, and I know that answers are important. Continue working with your doctors on that. Get pushy. Demand to see specialists. I think it’s terrible that you didn’t know your acuity numbers. That’s one of the first things I look at with a student, along with field deficits and visual functionality.
I would like to suggest that you seek out organizations that can help you gain skills so that you can be empowered to do things for yourself. You said something along the lines that you are pulled along through the grocery store, that you can’t access standard size print. There is training and technology that can help with that. I did a quick google search for the Vancouver area and found this organization http://www.cnib.ca/en/Pages/default.aspx If they can’t provide services for you, then they may know somewhere that can. They may know of or have specialists on staff to help get you answers as well.
I know that in the US, we have the National Federation of the Blind (NFB), the American Foundation for the Blind (AFB), The Lions Club, Lighthouse organizations, and at least a dozen other organizations dedicated toward working for people who are Blind. By American standards, you are legally blind and would be entitled to disability monies and rehabilitation services. You would have qualified for educational services as a child as well. I know it works similarly but different in Canada.
I’m not sure if I can help more, but send me any questions and I’ll see what I can do.
Derpette4220 [OP] 2 points 4y ago
The main issue for finding any stability is that I didn't know the severity of my problem until I was an adult. If I had known my acuity in childhood it would have been much easier. To apply for Persons With Disability status in Canada as an adult, you must have a doctor fill out a report stating your diagnosis, prognosis, and how your disability affects your life (in at least two vital ways). To the best of my knowledge, and as far as I can tell in my research, there are certain financial and employment record hoops you have to jump through as well. I believe you must have a six year work history with at least four of those years having a certain amount of hours worked in them to receive a disability tax benefit.
I haven't had a consistent doctor since pre 2010, and the doctor/patient ratio in my city is awful. I spend a lot of my time sending emails trying to find a doctor willing to take on a new patient. I have a fairly spotty work history (surprise, surprise), so I'm facing a lot of issues in receiving any disability benefits.
I've been told the Lions Club may "decide" to sponsor me with the donation of an assistive device, but I'm not sure that's much to bank on.
I realize it might sound like I'm making excuses. Genuinely, I'm trying to get better answers than these. Wait lists are so long and nobody seems terribly concerned with diagnosing me or helping me get things moving.
I have moments where I wonder if the best way to see a doctor is to check in to the emergency room. I don't know where this joke about Canada having good medical care came from.
I haven't had a consistent doctor since pre 2010, and the doctor/patient ratio in my city is awful. I spend a lot of my time sending emails trying to find a doctor willing to take on a new patient. I have a fairly spotty work history (surprise, surprise), so I'm facing a lot of issues in receiving any disability benefits.
I've been told the Lions Club may "decide" to sponsor me with the donation of an assistive device, but I'm not sure that's much to bank on.
I realize it might sound like I'm making excuses. Genuinely, I'm trying to get better answers than these. Wait lists are so long and nobody seems terribly concerned with diagnosing me or helping me get things moving.
I have moments where I wonder if the best way to see a doctor is to check in to the emergency room. I don't know where this joke about Canada having good medical care came from.
pokersnek 2 points 4y ago
You don’t sound like you’re making excuses. Navigating bureaucracy is super frustrating, and no one teaches you how. We all get to learn the hard way there. It’s not easy. I’m glad that you have the drive to find answers.
As for my thoughts on a diagnosis, you may be on to something with Stargarts. I know it’s rare, but then again, I know two people with it. It’s genetically recessive. From the way you describe your vision and the progression of your loss, it may be stargarts. Central vision loss is the main characteristic. Light sensitivity, night blindness, headaches and nausea... these all are very common side effects of vision loss. Eye fatigue is also a thing. If you notice more headaches after straining your eyes, that’s common.
However, the only thing that doesn’t fit is the fluctuating vision. That is more of a CVI thing, if we’re talking about waking up with different vision. If your vision gets more difficult to use throughout the day, that’s eye fatigue. However, CVI is usually diagnosed when there is nothing physically wrong with the eye or nerves, but the vision is affected. That doesn’t mean that you can’t have two things, but that would be rare.
I don’t mean to imply that you don’t know you’re stuff, because you’re clearly informed on the matter. I’m just thinking out loud.
As for my thoughts on a diagnosis, you may be on to something with Stargarts. I know it’s rare, but then again, I know two people with it. It’s genetically recessive. From the way you describe your vision and the progression of your loss, it may be stargarts. Central vision loss is the main characteristic. Light sensitivity, night blindness, headaches and nausea... these all are very common side effects of vision loss. Eye fatigue is also a thing. If you notice more headaches after straining your eyes, that’s common.
However, the only thing that doesn’t fit is the fluctuating vision. That is more of a CVI thing, if we’re talking about waking up with different vision. If your vision gets more difficult to use throughout the day, that’s eye fatigue. However, CVI is usually diagnosed when there is nothing physically wrong with the eye or nerves, but the vision is affected. That doesn’t mean that you can’t have two things, but that would be rare.
I don’t mean to imply that you don’t know you’re stuff, because you’re clearly informed on the matter. I’m just thinking out loud.
SnoobertDoobertDoo 1 points 4y ago
We're kind of in the same boat here. Of the half dozen plus specialists I've seen, none of them know what I have, but they can all agree it's bad. I was fine 2 years ago, but now I only have about 3% of my vision left. If you ever wanna vent, let me know.
lightyearr 1 points 4y ago
Dude I'm in the same boat. I say I'm blind, but I can't really give more info than that. I wear glasses 2cm thick, I have no periferal vision or depth perception, and I get constant headaches because my eyes are just constantly tired. I hate it.
Derpette4220 [OP] 1 points 4y ago
I tried medical cannabis for my nausea and headaches and OH BOY it does wonders.
Honestly though, if you need someone to empathize with you, I'm here!
Honestly though, if you need someone to empathize with you, I'm here!
BrailleNomad 1 points 4y ago
Hello OP. TVI here. I have a couple of questions for you. Do you have nystagmus? And how is reading for you- do you hold your books up close? Do your eyes tire out pretty quickly?
Derpette4220 [OP] 1 points 4y ago
No nystagmus. Even large text is best read up close, less than 30cm away. My eyes tire very easily, and the laziness of my eyes may become visibly noticeable with extreme fatigue.
BrailleNomad 1 points 4y ago
I was thinking it could be possible that you have ocular albinism. It can be a hard one for some docs to catch, because there aren’t any pigmentary changes with it. There’s an overlying condition that can go with it called congenital stationary night blindness.
Otherwise, I would still say you’re looking at Stargardts or retinitis pigmentosa. Regardless of how your peripheral vision is, the fact that your night vision is starting to get worse, it really sounds like RP to me. Can you go to a retina specialist?
Otherwise, I would still say you’re looking at Stargardts or retinitis pigmentosa. Regardless of how your peripheral vision is, the fact that your night vision is starting to get worse, it really sounds like RP to me. Can you go to a retina specialist?
Derpette4220 [OP] 1 points 4y ago
I've never had any night vision, it hasn't reduced with time. Just bad, not declining. Central vision is where I see the most deterioration.
Edit: the last opthalmologist I saw was a retinal specialist, he didn't have any answers. He said it wasn't RP, or Stargardt's, but there's always a chance he was wrong.
Edit: the last opthalmologist I saw was a retinal specialist, he didn't have any answers. He said it wasn't RP, or Stargardt's, but there's always a chance he was wrong.
BrailleNomad 1 points 4y ago
Well, it’s definitely cone-rod disorder. What type, I don’t know. But you have all of the symptoms/markers. Does anyone else in your family have vision impairment?
mamatobee328 1 points 4y ago
I’m so sorry you haven’t been formally diagnosed. That must be so frustrating and I can’t even begin to imagine how you feel.
I was wondering if you have been in contact with your local division of blind services? Or a lighthouse for the blind? Those are different than the agencies for persons with disabilities. Have you ever received any services for your reduced vision? You mention needing large font forms for the city election. Could you use a hand held magnifier or other tool?
I was wondering if you have been in contact with your local division of blind services? Or a lighthouse for the blind? Those are different than the agencies for persons with disabilities. Have you ever received any services for your reduced vision? You mention needing large font forms for the city election. Could you use a hand held magnifier or other tool?
Derpette4220 [OP] 3 points 4y ago
I'm Canadian, from British Columbia. I have a contact at the Canadian National Institute of the Blind, I carry a white cane, and I have an upcoming appointment with a mobility and low vision therapist.
While it is very helpful, beyond my first few assessment and orientation appointments and one white cane, everything else typically comes out of pocket. I just got an updated glasses prescription with clip-on blue light eliminating sunglasses, which my mother kindly shelled out almost seven hundred dollars for.
I could use a magnifier, I have a 2x and a 3x that was kindly donated to me via r/assistance, but it's still incredibly difficult. It's more based on the principle that they should provide anyone with what they need to carry out their civic duties or political careers, no matter their impairment. Any government entity above the municipal level would be required to do so.
I've never received any special treatment for my vision. I have a borrowed ID cane and I have yet to see anyone for vision services apart from my local representative and his receptionist, after registering 3+ months ago I finally have that mobility and low vision therapist coming on the 15th of this month.
While it is very helpful, beyond my first few assessment and orientation appointments and one white cane, everything else typically comes out of pocket. I just got an updated glasses prescription with clip-on blue light eliminating sunglasses, which my mother kindly shelled out almost seven hundred dollars for.
I could use a magnifier, I have a 2x and a 3x that was kindly donated to me via r/assistance, but it's still incredibly difficult. It's more based on the principle that they should provide anyone with what they need to carry out their civic duties or political careers, no matter their impairment. Any government entity above the municipal level would be required to do so.
I've never received any special treatment for my vision. I have a borrowed ID cane and I have yet to see anyone for vision services apart from my local representative and his receptionist, after registering 3+ months ago I finally have that mobility and low vision therapist coming on the 15th of this month.
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