Blind and Visually Impaired Community
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What can I do to help myself? And searching for a diagnosis. (self.Blind)
submitted by cabc79863
Hello,
already posted in the optometry Reddit but maybe I get some advice here how to cope better or someone has an idea to help me.
I'm reaching out to you guys in the hope of getting new ideas here.
This is what happened: When I was 15 (2014), I was found to have unspecific visual field deficits and the presumption that the cause might be an optic nerve hypoplasia. No diagnosis was made. The eye clinic had done an incredible number of examinations and that was the result. In 2020 I was diagnosed with a low frequency hearing loss, presumably congenital, during a hearing test by the hearing care professional.
Could my illnesses be related somehow I ask myself: Central coordination disorder, autism, tic disorder, slight hip dysplasia and hypermobility, myopia, astigmatism, unspecific visual field defects, hearing loss
2014 findings: Diffuse relative and absolute scotomas RA> LA (MD: RA: 10.15 / LA: 10.19) ERG and VEP normal. In the twinfield visual field, non-specific scotomas were still found in comparison to the previous finding. A further examination using Goldmann perimetry also confirmed a concentric narrowing of the field of view. MRI normal. By assembling the findings, we interpret the stated visual field findings most likely in the context of the very small to hypoplastic papillae.
Are there any ways to help in my life with that amount of vision loss or have I just to feel even more clumsy?
2020- I tended to have the impression of a deterioration in the last few months. Now it was measured again and I was told you couldn't tell if it had gotten worse. They lost all the old pictures.
How can I cope with my feelings towards that? Do you have experience with changing doctors?
ERG was inconspicuous in 2014 but no new one was made. How often in your experience are those made? I will ask the doctor if that's necessary.
What would you advise me to do next? Have you got any ideas I can take to the eye doctor? How do you prepare your appointments?
Tomorrow I will see a new eye doctor. So I am doing everything I can. But not knowing how it will progress is making me freak out. I just want to know. I can live with everything but I need to have any idea of what's coming in the future.
Thanks a lot for reading and stuff.
PS: This is no request of medical advice. I am seeing doctor's for that. I just want ideas that might help me deal with it or clues out of personal experience or knowledge I can take to my doctor to discuss with.
already posted in the optometry Reddit but maybe I get some advice here how to cope better or someone has an idea to help me.
I'm reaching out to you guys in the hope of getting new ideas here.
This is what happened: When I was 15 (2014), I was found to have unspecific visual field deficits and the presumption that the cause might be an optic nerve hypoplasia. No diagnosis was made. The eye clinic had done an incredible number of examinations and that was the result. In 2020 I was diagnosed with a low frequency hearing loss, presumably congenital, during a hearing test by the hearing care professional.
Could my illnesses be related somehow I ask myself: Central coordination disorder, autism, tic disorder, slight hip dysplasia and hypermobility, myopia, astigmatism, unspecific visual field defects, hearing loss
2014 findings: Diffuse relative and absolute scotomas RA> LA (MD: RA: 10.15 / LA: 10.19) ERG and VEP normal. In the twinfield visual field, non-specific scotomas were still found in comparison to the previous finding. A further examination using Goldmann perimetry also confirmed a concentric narrowing of the field of view. MRI normal. By assembling the findings, we interpret the stated visual field findings most likely in the context of the very small to hypoplastic papillae.
Are there any ways to help in my life with that amount of vision loss or have I just to feel even more clumsy?
2020- I tended to have the impression of a deterioration in the last few months. Now it was measured again and I was told you couldn't tell if it had gotten worse. They lost all the old pictures.
How can I cope with my feelings towards that? Do you have experience with changing doctors?
ERG was inconspicuous in 2014 but no new one was made. How often in your experience are those made? I will ask the doctor if that's necessary.
What would you advise me to do next? Have you got any ideas I can take to the eye doctor? How do you prepare your appointments?
Tomorrow I will see a new eye doctor. So I am doing everything I can. But not knowing how it will progress is making me freak out. I just want to know. I can live with everything but I need to have any idea of what's coming in the future.
Thanks a lot for reading and stuff.
PS: This is no request of medical advice. I am seeing doctor's for that. I just want ideas that might help me deal with it or clues out of personal experience or knowledge I can take to my doctor to discuss with.
siriuslylupin6 2 points 2y ago
Doctors is good.
Also time to get some training maybe to better cope with this. Ils and mobility possibly if it may get worse.
Also time to get some training maybe to better cope with this. Ils and mobility possibly if it may get worse.
cabc79863 [OP] 1 points 2y ago
My appointment with a special doctor is on 22th of march. I hope to get some new information then.
siriuslylupin6 2 points 2y ago
That’s good also work on the adjusting especially if you will go blind. I think it is important.
cabc79863 [OP] 1 points 2y ago
Thank you very much for your advice.
siriuslylupin6 1 points 2y ago
No problem if you want any help or more questions let me know.
IronDominion 2 points 2y ago
There’s a possibility of there being something genetically neurological going on. That’s just my hunch. I’d ask if seeing a neurologist may be a option.
Do some googling and your own research, and ask questions, patients being involved in their own care and diagnosis is important to make sure both your doctors and you are on the same page when it comes to your treatment and testing.
Do some googling and your own research, and ask questions, patients being involved in their own care and diagnosis is important to make sure both your doctors and you are on the same page when it comes to your treatment and testing.
cabc79863 [OP] 1 points 2y ago
Thank you. Today I was told to see another specialist. But that it is stable for the moment. I am a bit relived.
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