Blind and Visually Impaired Community
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My husband is going blind. (self.Blind)
submitted 5.305375675154321y ago by princess-coldheart
I don't know if I'm looking for answers or what. I'm just trying to see if there is anyone out there who has dealt with the same or at least similar set of issues my husband is having.
My husband is 25 and his eyesight has been deteriorating overtime. We had no idea how bad it was until he had to get his license renewed and he couldn't pass the vision test.
He originally thought he may have just needed glasses but here's when things got scary- the optometrist who examined him told him that he needed to seek medical assistance asap. It appeared that he had a brain tumor or possibly even a stroke. He also found out that he was in the earlt stages of going color blind.
So we went to the hospital and neuro Ophthalmologist ended up examining him. No brain tumor, no stroke. But there was still something very wrong with his eyes. He was tested for lebers, MS, glaucoma, diabetes, and even heavy metal poisoning. Absolutely nothing. The nuero had only seen something even some what similar in one other paitient. From what we were told it is something possibly hereditary. He was diagnosed so far with optic nerve atrophy and macular degeneration.
My husband was not always color blind and he has been losing his color vision pretty fast. His depth is getting pretty bad as well. The doctor told him either he won't got blind until he's in his 70's or it could happen within a few years. There's no way to really tell right now, since I guess his conditon is so rare that there isnt even a damn name for it.
I'm sorry for the long story. But I'm stressed and scared. I don't know how to help him. Is there any one else out there with some super rare disease caused them to go blind? I wish I knew what to even expect here. The scariest part of this is the unknown.
My husband is 25 and his eyesight has been deteriorating overtime. We had no idea how bad it was until he had to get his license renewed and he couldn't pass the vision test.
He originally thought he may have just needed glasses but here's when things got scary- the optometrist who examined him told him that he needed to seek medical assistance asap. It appeared that he had a brain tumor or possibly even a stroke. He also found out that he was in the earlt stages of going color blind.
So we went to the hospital and neuro Ophthalmologist ended up examining him. No brain tumor, no stroke. But there was still something very wrong with his eyes. He was tested for lebers, MS, glaucoma, diabetes, and even heavy metal poisoning. Absolutely nothing. The nuero had only seen something even some what similar in one other paitient. From what we were told it is something possibly hereditary. He was diagnosed so far with optic nerve atrophy and macular degeneration.
My husband was not always color blind and he has been losing his color vision pretty fast. His depth is getting pretty bad as well. The doctor told him either he won't got blind until he's in his 70's or it could happen within a few years. There's no way to really tell right now, since I guess his conditon is so rare that there isnt even a damn name for it.
I'm sorry for the long story. But I'm stressed and scared. I don't know how to help him. Is there any one else out there with some super rare disease caused them to go blind? I wish I knew what to even expect here. The scariest part of this is the unknown.
CinnamonDonkey 6 points 5y ago
My son is 14 and was recently diagnosed with bilateral optic neuritis (inflammation of both optic nerves). His symptoms sound similar to your husband though. They did countless tests, an agressive steroid treatment, ivig treatment and even 7 rounds of plasmapheresis and nothing really helped. They have weaned him off the steroids and say there is nothing else they can do and they have no idea the cause or if his vision will return. It has been many months. Has been very scary. I hope the best for your husband.
princess-coldheart [OP] 3 points 5y ago
I'm so sorry about your son. It is scary. My husband was told his optic nerves are literally dying. He was also told since there no real answer to know whats even wrong with him theres no way to help him. I'm so afraid that whatever this might be end up being passed down to our child.
Your son is way too young to be dealing with something so terrible. I hope there is some sort of fix out there for your son. I could not even imagine going theough something so scary at 14 years old.
Your son is way too young to be dealing with something so terrible. I hope there is some sort of fix out there for your son. I could not even imagine going theough something so scary at 14 years old.
finn141414 5 points 5y ago
I know of someone (late 20s/early 30s) who recently lost most of her eyesight and, after a lot of frightening tests, was diagnosed with optic neuritis. She was put on steroids and was largely better in a few weeks.
Typically it’s caused by either MS or NMO (can’t quite remember what NMO is) but she apparently has neither at least not now or yet ...
Color blindness is a symptom of optic neuritis so that has me thinking ...
If this sounds at all like what he might have I found a Facebook support group that has been really helpful - even if the diagnosis is unsure they are very knowledgeable ...
I wish him the best
Typically it’s caused by either MS or NMO (can’t quite remember what NMO is) but she apparently has neither at least not now or yet ...
Color blindness is a symptom of optic neuritis so that has me thinking ...
If this sounds at all like what he might have I found a Facebook support group that has been really helpful - even if the diagnosis is unsure they are very knowledgeable ...
I wish him the best
princess-coldheart [OP] 6 points 5y ago
I just looked up optic nueritis and it sounds so similar to whats going on with him. I will tell him to ask his neuro ophthalmist about it. If it is something like optic nueritis maybe steroid treament would work for him, I could only hope
ratadeacero 2 points 5y ago
I read my wife this post so I'm going to give her perspective and my perspective:
" I had 20/20 vision until I turned 30. I started to lose my vision so I went to an eye doctor thinking that I simply needed glasses. When I went, the doctor scooted back in his chair and said, 'whoa, I can't help you.' He sent me to a neurologist, thinking there was something wrong with my brain. Many invasive tests later, he sent me to an optoneurologist. He knew once doing his test that he would not be able to help me, so 2 years in he sent me to a retinal specialist. All of my friends had doubted me, saying I should seek psychiatric help. The retinal specialist, after lots of Clockwork Orange style tests and dyes injected into my arms was able to determine that I have a rare recessive disorder called progressive cone dystrophy. It causes me to go blind slowly. Visual acuity is the first to go. Color vision changes, sometimes achromotopsia. It was a relief to get a diagnosis. I wasn't crazy. It takes a long time to adjust to losing your independence. You have to go through the stages of mourning over the loss of your sight."
From my perspective, being stressed or scared is natural. but remember, you can't change some things and you have to take a roll with it approach. My wife and I knew each other for many years but didn't start dating until her vision started to go. I've seen her depressed at times over this, but you just have to go on. I think the hardest thing for her is her loss of her ability to find a job. She's on disability now. She also has battled alchohol abuse. Part of this is boredom on her part. Being blind is boring af. We still go camping, hiking and do other activities. It's obviously hard for a person who was previously sighted to lose their vision. For me, the only major change is that I have to read menus for her when we go out to eat.
Best of luck to you and your husband.
" I had 20/20 vision until I turned 30. I started to lose my vision so I went to an eye doctor thinking that I simply needed glasses. When I went, the doctor scooted back in his chair and said, 'whoa, I can't help you.' He sent me to a neurologist, thinking there was something wrong with my brain. Many invasive tests later, he sent me to an optoneurologist. He knew once doing his test that he would not be able to help me, so 2 years in he sent me to a retinal specialist. All of my friends had doubted me, saying I should seek psychiatric help. The retinal specialist, after lots of Clockwork Orange style tests and dyes injected into my arms was able to determine that I have a rare recessive disorder called progressive cone dystrophy. It causes me to go blind slowly. Visual acuity is the first to go. Color vision changes, sometimes achromotopsia. It was a relief to get a diagnosis. I wasn't crazy. It takes a long time to adjust to losing your independence. You have to go through the stages of mourning over the loss of your sight."
From my perspective, being stressed or scared is natural. but remember, you can't change some things and you have to take a roll with it approach. My wife and I knew each other for many years but didn't start dating until her vision started to go. I've seen her depressed at times over this, but you just have to go on. I think the hardest thing for her is her loss of her ability to find a job. She's on disability now. She also has battled alchohol abuse. Part of this is boredom on her part. Being blind is boring af. We still go camping, hiking and do other activities. It's obviously hard for a person who was previously sighted to lose their vision. For me, the only major change is that I have to read menus for her when we go out to eat.
Best of luck to you and your husband.
TheBlindBookLover 1 points 5y ago
Hi. I just wanted to let you know that there are resources available to help teach your wife to live independently such as through the National Federation of the Blind and your state’s Department of Rehabilitation Agency. With the right help, she can do so many things such as using a cane, reading braille, and operating a computer. If she learns the necessary skills, she will be able to find a job. I hope that this helps in any way. The both of you will be in my prayers.
offendedkitten 2 points 5y ago
My fiancee has rod-cone dystrophy, diabetic retinopathy, and cataracts which he just had surgery for. I've been in the same boat for being scared, and stressed.
pokersnek 1 points 5y ago
There are so many different speculations running around, I would suggest trusting your doctors. If you are not satisfied with the diagnosis you have, seek specialists. There are so many reasons the optic nerve can stop transmitting information to the brain, that I’m not sure what to think of this case.
I am a Certified Orientation and Mobility Specialist. I teach people who are blind or visually impaired how to travel with a cane. Your husband will probably benefit from this kind of training at some point. Maybe not now, since it’s a very fresh experience. If you notice him having a difficult time getting around or tripping/bumping things, then maybe seek help.
If you are in the US, he can get assistance through your state’s Department if Rehabilitation. He can get training, services, and devices through them.
You are not alone. This will be an adjustment. There is help out there.
I am a Certified Orientation and Mobility Specialist. I teach people who are blind or visually impaired how to travel with a cane. Your husband will probably benefit from this kind of training at some point. Maybe not now, since it’s a very fresh experience. If you notice him having a difficult time getting around or tripping/bumping things, then maybe seek help.
If you are in the US, he can get assistance through your state’s Department if Rehabilitation. He can get training, services, and devices through them.
You are not alone. This will be an adjustment. There is help out there.
OutWestTexas 1 points 5y ago
Has he been to a retina specialist? It sounds like Cone-Rod Dystrophy which I have.
princess-coldheart [OP] 1 points 5y ago
This is something else I will have to look up. He has never been to a retina specialist. Only a regular ophthalmologist and a neuro ophthalmologist.
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