Thank you...I'm praying they have the results today. It's been difficult to wait. I really want answers so that we can be able to deal with problem rather than speculating what ifs.

Thinking of your son, you and family as you await word on the diagnosis. Praying you get the results and can move onto treatment. :love:

So my son is going blind and the doctors can't figure out why. So far the tests do not point to anything specific. At this point they do not believe that he will regain any vision and will lose the vision he has left. Without anything to go on, there is no treatment and they are running out of tests to do. How does a 25 year old deal with this and how do I deal with it? I can't make him better...I feel helpless and worried for my son. This is so hard too deal with...I can only imagine what my son is feeling.

I guess I should be thankful, since it could be worse but I'm really struggling.

I'm so distressed for you that you all didn't get any definitive answers yet but the good news is there is nothing apparently imminently fatal. That's wonderful news in and of itself.

The tests and docs are obviously missing something or whatever disease process he has is too early to show itself. It's likely autoimmune in nature unless it's some odd quirk of a thing going on. I've heard many of the neurological autoimmune diseases are not easy to diagnose at their early stages and it can be a slog to get a diagnosis.

Has he seen an opthalmologist yet? If malignancies and fast-growing tumors have been ruled out, an opthalmologist might try him on a course of steroids to help any inflammation from possible optic neuritis, which could be what's affecting his sight right now.

Next step is keep going - see the best opthalmologist in town as he'll know if there is anything that can be done short-term and likely where to refer him next and what specialists to see next, how to get him help right now for dealing with his vision loss, get him started on what visual aids and coping classes are available, magazines and books on tape, etc.

If he's seen an orthalmologist already, I'd consult with another - the head of the Opthalmology Department at the largest, most respected hospital in the nearest big city if at all possible. That guy should be able to refer him on to the next right specialist to keep on working him up for a diagnosis. He needs to get in to see another neurologist who specializes in autoimmune neuro diseases - one who practices at a different neuro clinic and has a team of physicians who work with him for a whole new series of sets of eyes and maybe a few new different approaches in tests, treatment protocols. They will ultimately find out what is going on - sometimes it just takes a lot of effort.

And you need some support. Ask your son's neurologist or call your pastor or a local church, large MS clinic, to find out what support groups are available in your area for moms dealing with children going through hell. You'll help him more by helping yourself when you can. My prayers for your son, you and his father will go on.

I am so sorry you do not have answers, however it seems that some of the worst causes are being ruled out.

This is a wild guess on my part, but something I will share because I know a person who experienced this and later regained sight: Hysterical blindness explained here: What Is Hysterical Blindness? | Enlighten Me

I wish your son all the best in recovering, whatever this is, and a happy life regardless of what comes.

He has been to the opthomologist and a neuro opthamologist as well as a neurologist and a few mores doctors I can't remember. He has a new appointment with another specialist tomorrow that is supposed to give us the where we go from here bit. His records have also been sent out to other specialists for input and suggestions. The only good thing so far is that he has several doctors interested in his case just because they are stumped as to the diagnosis.

On the up side, the guitar that was not supposed to arrive until Friday just showed up on our doorstep. He is still at the hospital talking with a counselor there but when he gets back from the hospital it will be waiting for him. I know it won't take away what he is feeling but I hope it will help take his mind off it for a little while. He will get his first lesson Saturday but he can unpack it and start figuring out how everything goes.

Son
 

So happy the guitar came early. It seems you have seen so many docs and had so many tests, with no results .
But the docs are still looking into his case and he will be seeing another specialist tomorrow. So as long as they keep up the interest an answer will be found. So take heart . There IS a reason and it will be found.
Please keep us posted and try and stay positive.
Thoughts and prayers.
Dot.

Glad he consented to see a counselor. Hopefully they will help him learn some coping skills for the next weeks and months and the guitar will work to distract him and he can focus on it. Don't hesitate to let him take his temporary sedation when he needs it.

I'm so sorry he will have to keep seeing specialists but some team of specialists or one of the docs will one day hit on what is going on - something will show itself sooner or later. Don't give up on medical science, fight for a diagnosis sooner rather than later. It could be a combination of things, not just one disease process. Another hospital with another stable of specialists and different testing protocols will have to be his future until there are answers.

Has your son gone through anything traumatic or highly stressful in the last few years - had a close friend die, been involved in a bad car crash? Any other symptoms at all?

I know you must be utterly exhausted. Go to be early tonight and take a sedative yourself, get what rest you can. We'll be praying.

He hasn't had anything traumatic happen. He has actually been really happy up until this point. He struggled a bit when he was younger, not knowing what he wanted out of life. Then he figured things out, graduated from college, started the Masters program and was making plans for the future. Then this happened and he had to take incompletes in his classes and put off his job plans until he finds out what's going on.

Usually, any type of conversion disorder causing blindness has a traumatic or highly stressful event/antecedent that precedes it, but I'm sure he's been tested for that possibility by his specialists.

If he likes to read, he should qualify for your state's and the BARD NLS free talking books, magazines and newspaper program. They usually send out a free digital player - or your can buy your own - and send pre-recorded thumb drives with whatever pre-selected material or books he'd like to read and return by mail, or you can download the books, mags, etc., from the BARD NLS website to your personal thumb drives to plug into the player and listen to. An 8 GIG thumb drive can hold as many as 60 - 80 audio books. Call your state's talking book program for the blind and disabled as even those temporarily unable to hold or read printed material for whatever reason can usually quality for it as long as they can't access reading material any other way. The agency can tell you what he needs to qualify for it and how to get him started on it.

I am very sorry for your son, you, and your family that you are going through this. Praying for your strength to face this difficult and frustrating challenge, for answers, and for the best.

Very good information from Jeanie to help your son with reading, and ultimately school.

Thank you for the information. I will look into it. I had bought some audio books for him but this would be great since they are pretty expensive. The college told him he can get his textbooks on audio for next quarter and can record lectures as well as an aid to help him get to and from his classes on campus. I'm not sure yet if he plans to go or not but the option is there.

I will be praying for complete healing for your son! Your entire family is in my thoughts and prayers.

This is tragic......
There is a world reknown eye center here in Houston.... , headed up by Dr.Alice McPherson, Baylor College of Medicine. People come from all over the world to see this woman and her team.....I KNOW they are heavy into retinal diseases/disorders....she has a large team....maybe you could call her office and explane what is going on with your son, that you are desperate for answers, even a diagnosis, and you have not been able to get that as of yet. Maybe she and her team can see him.....I know you would go to any lengths to get help for your precious son....If I was in your shoes, I too would not stop looking for answers....and I would contact Alice McPherson for help of any kind....this is a doctor that would definitely be on my list of people to see my son.....leaving no stone unturned...this woman and her team is absolutely phenominal, and her reputation extends world wide....I just wanted to share this excellent physician with you in case you wanted to check her out.
I sent a patient to her years ago....he was given no hope to keep the eye sight in one eye....she saved this young mans eyesight, when he had been given no hope by many other professionals and experts.....