IamA 19 year old girl who may be going blind. AMA!

Have you had or thought about school/training?

I'm in college right now, but I don't know if I will be able to finish because of all the pain I'm in with my condition. I was diagnosed less than a year ago. I haven't given too much thought about how to train for the rest of my life.

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I've recently become partially blind due to MS and just, thank you. What you wrote really made me smile and I don't plan to give up my dreams and goals even if they have become more challenging. This is just annoyed bump in the road.

When I was going through my diagnostic process they originally thought I had MS. I have so much respect for you for saying that. I wish you the best of luck in every single thing you do.

I was reading through your comment history (easiest way to peruse an AMA, and also to see if I could find your general location, more on that in a second) and saw that your new year's resolution is to read more. I also saw that you're from the south, (US more importantly), so to piggyback off of what /u/mashington14 said, contact your local library for the blind. Every state has one as part of the National Library Service for the Blind and Physically Disabled. They'll be able to help you out with programs and services in your area to help you with your transition, if necessary, and get you ready to go with books on tape or braille if the need arises.

The National Library Service is a free mail-order program open to anybody that is blind, or has a physical disability that makes reading difficult. We have braille, books on tape, digital talking books, playaways, described video, and described DVDs and Blu-Rays (though these are slightly less of a specialty item; it's simply a secondary audio track already on the disc, most people just don't realize that). A special Digital Book player will be sent to you to play the proprietary cartridges we use, and if you request one, you can be sent a cassette player to listen to some of our books that haven't been converted to digital (cassettes are recorded at 4x speed, so it won't sound right on a traditional player). We also offer a (free) download service called BARD (Braille and Audio Reading Download) where you can download any digital books or magazines produced by NLS or the network libraries, and put them on a thumb drive to listen on your Digital Book player. There's an iPad/iPhone app currently available to use with books downloaded from BARD, and they are working on making an Android app available.

Anyways, I mention this mostly because I know how few people even know about the program's existence. The only reason I know about it is because I work at one, and even that was an accident. It's part of the larger local library system that I worked at, and I didn't even know it existed until a friend/future co-worker told me there was a position opening up there at the time, and that I should apply for it.

If you have any questions, feel free to PM me, and I'll do whatever I can to help you out.

TL;DR, I hope it doesn't happen to you, but if you do lose your sight, there are plenty of resources available to help you out!

Thank you so much!

OP says the thing she fears the most is missing watching her siblings grow up, it made me curious, are you able to perceive people's ages easily? Can you tell by touch or sound what has changed about someone over an extended period of time? That was an awesome post and thanks for any answer you can provide.

I don't really touch people. that's not something blind people actually do. but I can tell a lot from someone's voice.

That's what I was thinking when someone was telling me I could just feel them age. I don't think my siblings would appreciate me just touching them all over their faces. That seems like a good way to get poked in the eye.

It looks like you've known about this for a few months now, and it's had time to sink in. I don't mean to sound awful, but how does it feel knowing? I mean, some people go blind all of a sudden, because of an accident or something. They don't have to dwell on it; It just happened. So I guess, is it just dreadful, or have you sort of come to terms with it? I ask, because I imagine I would become a depressed, bitter, angry person if I had so much time to think about it.

Also, what are the chances that you wouldn't go blind with treatment?

Edit: Spelling

I have known almost 9 months. I get angry. I get sad. I get bitter. It depends on the day. But originally they thought I had MS so I try to look at that and remember that things could be worse. I am receiving very good treatment. I just answered a question about treatment that went into some detail. It all really depends on how things progress. It is relatively new diagnosis for something so long term so I try to keep in mind that anything can happen. There are still surgical options I can look at.

Neuro-Technician here; It is a very treatable condition baring complications that often are caused by additional medical conditions. What type of treatment are you receiving and do you find it effective?

This is what confuses me. It took them days to get the pressure lowered on my wife. If that didn't work they'd have put in a shunt.

Are you aware of how they attempted to lower the pressure initially?

For my wife they did it with a spinal tap to verify. Then she took a combo of meds. Diuretics and some other shit. Sadly it (the pressure) fucked up her pituitary gland (crushing her brain for ~3-4 years, the source of her migraines) so she also had to do HGH shots as well.

The sheer volume of doctors she saw and all of them missed it really upset me once her ophthalmologist found out what the issue was. She said it's not that fucking rare all those other doctors shouldn't have found out significantly earlier what the issue was. So the pressure on her optic nerve is what tipped her off (the ophthalmologist).

Honestly, this is what kept me married for the better part of my marriage. I couldn't leave her in the lurch, no matter how shitty she was to me. Ah, hindsight as she tried to fuck me six ways from sunday once we did get divorced (got married so she could get on my insurance, so I figured she'd understand).

Serenity now!

Oh they warned her about the post tap headache, it was the first time in 3+ years she said she didn't have a headache. Crazy shit. She actually thought she was going crazy after all the doctors couldn't figure it out.

I feel like have heard similar stories to this a lot. So many people have such a hard time being diagnosed. It isn't THAT rare, but most doctors just don't understand it because they have only heard about it once or twice in a medical textbook unless they are specializing. That may just be my experience, but that's how it has seemed from the people I have had to deal with.

Just keep in mind, even if you do go fully blind, you've got great odds that it's only going to be temporary! With the rate that medical technology is advancing, we're gonna have all sorts of bionic eyes and brain implants rolling out in the next few decades.

That could be true

What's your favourite type of peanut butter, and why is it crunchy?

Because crunchy is obviously the best

Have you ever heard of Daniel Kish? He had both his eyes removed but intuitively learned echolocation and can go hikes by him self and even ride a bike. He owns a non-profit that tries to teach the method to other blind people

http://www.worldaccessfortheblind.org/node/105

not wanting to offer false hope but I don't believe it to be false.

The iinvisibilia also did a podcast on it called "How to become bat man"

I would check it out. http://www.npr.org/programs/invisibilia/378577902/how-to-become-batman?showDate=2015-01-23

That is really interesting! Thank you!

If it's just a built-up of fluid, are there any procedures to release/extract some of the excess to relieve the pressure and subdue the symptoms?

There are a few options for treatment. The first option is repeated lumbar punctures. This is the option most people use as it is the non-surgical option. However, repeatedly having a large needle inserted into your back does't come without risks. There is always a chance of infections, meningitis, and Post Lumbar Puncture Headaches. Headaches after a lumbar puncture are the result of the puncture not healing correctly and spinal fluid continuing to leak out. It is incredibly painful and can cause seizures. If it happens they will have to do an epidural filled with the persons blood to patch the hole in the spine. It isn't a fun time. In order for spinal taps to be an effective form of treatment they have to be done regularly to keep the pressure down which can interfere with normal life. Even though they suck I still have them done. I am going to have another one done soon. Pressure can build up very quickly though so spinal taps alone can't always save someones vision.

The next option is shunts. Shunts are tubs that connect and drain fluid from the brain into the abdomen or the heart. However they often become infected and have to be replaced over time. A lot of people find them to be ineffective for a variety of reasons. They are also incredibly painful to have put in.

There is a newer treatment that doctors are starting to use that is brain stenting. It is just like having a stent put in the heart, though there is a little more risk since the materials are made to go in the heart and are being put in the brain. It is having a lot of success. I am actually having a scan done to see if I qualify for this procedure soon. Not everyone does though so there are no guarantees that it will happen.

I have this condition and had regular lumbar puntures for about 3 years that eased the pressure and kept it under control. The best thing to do is have them done by an Anesthetist- they are fantastic at preforming them. The low pressure headaches afterwards can sometimes be avoided lying down for a couple of hours after and drinking a can of coke or a red bull. I did this each time and touch wood I was ok.

I have a vp shunt- I had it replaced twice within the first few months of having it. Yes there are pros and cons to this but ultimately it will probably save your sight. I'm on to my third and I don't even notice it now it's just there at the back of my head doing its thing! The only time it comes up in conversation is at the hairdressers if there is a new member of staff in and she is washing my hair and I just ask her to be careful massaging the shampoo around that area!

If you want to PM and ask me anything you can. But weigh up all your options. Change doctors if you have too. You maybe need to see a neuro-optomologist not a neurologist. My neurologist is trained in this area so I struck lucky.

I am seeing a neuro-optomologist. I am evaluating if a shunt is the right choice for me. I really don't feel like it is. I am trying to find out about getting a stent.

They are also incredibly painful to have put in.

Is this why you're not doing it? Because the procedure is presumably done under anesthesia unless you have some sort of bizarre contraindication.

Well of course you are under anesthesia, but eventually you wake up from that at which point you begin to notice that they inserted something into your head. That isn't why I'm not doing it though. There are just so many complication risks for something that may not work. I'm trying to keep it as a last option. I'm investigating another option first .

Someone may already have asked this. If you were to go blind, what do you think you'd miss seeing the most?

Just watching my little siblings change as they get older. They are so cute, but I guess I may not have to see them grow out of that so maybe it's not so bad. And flowers. And books.

How many fingers am I holding up?

11?

Are you worried that you will start to get asked out by ugly guys?

I guess it won't matter. I'm not super hot so attractive guys aren't banging my door down as is.

Hey bud I'm you! 19, girl, pseudotumor, all that fun stuff.

When did you first start havin symptoms? Mine started right before I turned 18, n we got it taken care of but it came back also a year later.

Did you get the waves in your ears and a stiff neck?? A lot of the ppl I've talked to who have this never got the stiff neck, which is bullshit, bc it's awful.

What meds have they got you on? I'm on Diamox rn, but my neuro wants me to switch to a different one bc Diamox hurts like hell

I'm sorry to hear that You are Me. Being me is pretty shitty. In case you are interested there is /r/iih which is small but it could grow!

I first started having symptoms when I was 18. I was diagnosed about 9 months ago.

The waves in my ears just recently started as did the stuff with my neck. I would say within the last two months. It was hard to notice when it first started, but now I definitely notice.

I am on Topamax. Diamox made me violently ill, but we think it may have been an interaction. Topamax is pretty rough though, but I imagine it is what they would switch you too. I can't say if it's better or worse. Probably about the same.

What kind of things are you interested in experiencing visually before you lose your sight? How do you cope mentally/emotionally with knowing that you may someday have a disability?

I want to read every book I can. I know there are always audio books, but it isn't the same.

I don't really cope. I mostly just pretend it isn't happening unless I have to. I have been really lucky that my best friend here in college had actual brain cancer so even though this is much different, she understands a lot of the physical pain I am in. It has helped a lot. But I'm not emotionally equipped to deal with it at all. So I try my best not to.

What is your favourite thing in the world right now? Bonus - virtual hug from me! Good luck!

Books

I have to say I'm not so much a book person myself, it takes me so long to find something stimulating compared to TV, games or film. What would you recommend?

It is hard to recommend a book to someone without know them. I have always been a really big reader so I will read almost anything. for people who don't like to read, I think it's good to find a series though because then you get to stick with characters you already like and don't have to start the hunt over again for books you like.

Neuro-Technician here; Baring complications with treatment from other medical conditions this is very manageable albeit taxing on the patient but still a treatable condition. What form of treatment are you undergoing if any? Are they working to your expectation?

I am on medications, which are incredibly taxing and I receive regular spinal taps. We are investigating surgical options. It has progressed quickly, especially in my left eye. I understand that for many people it is very treatable, but without seeing an individuals case you really can't speak for how manageable it is for that person. Since diagnosis in the last 9 months I have seen my field of vision decrease, my color vision decrease, vision in my left eye is blurry, most of the time my vision is hazy like I'm living in a dream, my vision flips upside down entirely sometimes, and I am in almost constant pain. So I would say no, it isn't working to my expectation.

Oh no this is all generalizations with data we have acquired over the last 2 years. Every case presents different variables as every patient has different variables. Does your vision return with effective treatment or after a lumbar puncture or is it still impaired post treatment? Have you considered and discussed with your provider the possibility of a stent?

It mostly returns for a few weeks and then it begins to deteriorate again. Some of the things do not go away but things like the vision flipping upside down go away. I am looking into getting a stent. We still haven't done the MRV(?). I am supposed to travel and see the specialist as soon as next week to discuss it.

so reading this physician note, it seems like the "doctor" has spent minimal time in documenting your history or physical exam. have you tried seeing more involved doctors for your very treatable condition so you won't have to be blind?

There were 12 other pages to that note that went into great detail about my eyes. He doesn't spend much time on things that don't concern that. I like him though. I just didn't want to try to black out 12 pages of stuff lol

I can't imagine what that must be like. I'm your age and the biggest problem I have is that my hair is falling out and I find that terrifying.

How do you stop yourself from panicking over the idea of losing your vision? I know I wouldn't be able to.

I just pretend that it isn't happening as much as possible or else I will panic. I try to focus on finding solutions and treatment. If I think about it I get really angry and bitter.

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No, I can't afford to. I already have to travel out of the state a lot to see my specialist for medical treatment.

If you could afford to, where would you go? Any places close(ish) by you'd wanna check out? What about overseas?

I would probably go to the great barrier reef. It's so full of color and life. If i lost my vision I think that would be a good thing to have to remember. Or maybe to Puerto Rico. I could snorkle there and go into the place with the plankton things that glow when they are disturbed. Really anywhere with a beautiful ocean I guess.

Will you go skydiving before you go blind?

That would be really cool, but probably not

If you did wind up going blind, what would you want the last thing you saw to be?

My family. Or maybe the sun setting of mountains, that would be like a movie.

Will you accept my virtual hug for hoping that you get through this and live a happy life?

I will accept all virtual hugs! Thank you! I love hugs!

Have a virtual hug from Germany!

Thank You!!!

Is your vision blurring, or is it darkening?

Everything looks hazy. Almost like I'm in a dream. I see dark spots and things don't stay stable or focused. It is a lot more noticeable in my left eye than my right. On tests my field of vision is smaller and my color vision is slipping, but that isn't something I can really tell.

Do you know how to draw? Will you continue while blind?

I do not know how to draw.

Have you considered picking up piano (or another instrument) so that if you do go blind you can make good use of your newly improved ears?

I am not musically inclined. I would love to play the piano though.

Can you see why kids love the taste of cinnamon toast crunch?

Yes I can. It's printed clearly. 9 grams of sugar per each 31 gram serving.

Reading your answers so far, you sound like a strong, young woman. I wish you all the best of luck in your major (sociology major here) and everything else! And also adding to your pile of virtual hugs!

What made you want to go into social work as a major?

I can't really give a goo answer to that. It just seemed like something I would be good at. I care about people. If i got to work in child welfare one day I think I could do a good job at it.

Have they considered a Ventriculoperitoneal shunt?

I also have Idiopathic Intracranial Hypertension AKA pseudo tumor cerebri. I went blind for two weeks because of grade 5 papilledema before I had eye surgery to relieve the pressure but it left me legally blind. I have no peripheral vision and my optic nerves are bit crushed but I have no problem using a computer which is obvious. I was asymptomatic for a while using a lot of Diamox but eventually six months later it got bad again and my doctors thought it best to go with the shunt. The surgery sucked and I had a lovely comb over for a while but it was worth it in the end because I usually only have a PT migraine once a month and use my medication when I need it.

Oh my gosh. Your story makes me so sad. I am so sorry. I am looking into the option of a stent right now. I do not want a shunt.

Would you rather fight a duck the size of a horse, or 30 horses the size of ducks?

A horse sized duck

Not a wise choice imo... duck sized horses are pretty puntable

I just think I would get overwhelmed with all the duck sized horses, especially if they come at me in a mass when everything is blurry. My vision is an issue. If they get my onto the ground I am a goner. Too many tiny hoofs. I can see how it would be a better option for some people, but with my vision issues I think I stand a better chance against a single large Duck.

What sight will you miss the most?

Just watching my little siblings change as they get older. They are so cute, but I guess I may not have to see them grow out of that so maybe it's not so bad. And flowers. And books.

Is your medical insurance covering the majority of the costs for the visits and treatment? Also how skydiving was mentioned, prior to if/when you go blind, tandem rates are fairly reasonable ~@$225. It'd be one of the best visual memories to have, aside from seeing the faces of your loved ones. Good luck with everything

They are covering a lot. I have really great insurance and the company has worked with me a lot. I will have to remember that. Thank you.

Have you thought about learning braille?
Oh and the wait list for a giuide dog (if that's something you would want) is very long.

I haven't put much thought into it yet. I haven't even thought about the wait list either.

Are you scared?

Terrified. Even if I don't lose my vision I am terrified of the treatment.

Why are you doing this AMA?

I have no idea.

If you could choose a single image from your life that you could always see after losing your sight what would it be? I'm not talking about recalling a memory but actually having that sight be permanently etched throughout your visual cortex of your brain so you could summon the image at will in the exact same quality as when you viewed it.

A day where my family and I were at the beach this past summer. It was a really good day. We did all of the cheesy things like bury my brother in the sand. And my dad didn't like that his little sister, my aunt (18), was wearing a bikini so as a joke who threw chips all over her while she was tanning and seagulls were trying get her. She thought she was being attacked. Just any still image from that day would work for me.

That really sucks. I'm curious as to if this condition changes how your eyes look?

No they look normal on the outside.

are you a music lover? I think being blind wouldnt be so bad if you loved music. I think music is the one thing I couldnt live without. Do you play an instrument?

I do like music a lot. I do not play an instrument though.

Have you started learning echo location in preparation for the worst?

No, not yet

If you find out that you WILL go blind. What is the thing you want to look at the most?

Books, my family, and flowers

What was your first emotion when you found out? Were you scared?

At first I was just surprised that my life could change so much at 19.

What are you studying in college? Are their potential career paths that wouldn't be hindered too much by your condition or eventual blindness?
Also, will the blindness come about eventually, slowly getting worse, or will it be ok one day and then gone within days/ weeks?

Well I am studying social work, which would definitely be hindered. I really have no idea what careers to look into.

I have no idea. Progression was manageable until the last two or three months. Every persons case is different. I have to travel out of state for treatment so I am getting ready to see my specialist to discuss new options that could help.

FWIW you should have no problem doing social work, even if you go completely blind. For a while I worked for a disability rights advocacy nonprofit, and they employed several social workers, many of whom had disabilities of various sorts. Lots and lots of people with disabilities have successful careers in all sorts of areas. Just because you might become vision impaired should not limit you in terms of career, especially in social work.

Thank you! Thank you! Thank you!

Did you make a bucket list of things you want to see before you go blind?

I do not. I need one!!! I need help making one though. Any suggestions?

Are you looking at lots of pictures of stuff so you know what it looks like in case you go blind?

Yes

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It depends on what I am having done that day. Luckily I have fantastic insurance though so they take pretty good care of me.

Hi. I have rather a strange question that requires you to do a physical action for me. The only reason I am even making an odd request is that your symptoms sound scarily identical to mine, almost as if I was reading about myself when looking up more information.

If you will, pick a fixed point to stare at on the wall or wherever you choose to look. Now turn your head left and right while keeping your eyes fixed on that point, do you see a perhaps dark/clear/grey bulge appear in your vision? It might be best to do this on as bright of a color wall as possible. Thank you for taking the time to read and potentially complying to my odd request.

I have no bright walls but I tried it on a bright object and didn't have it happen. It is important to remember that a lot of neurological problems can present themselves in similar ways in the beginning stages and that within this disease every single person is different. My mom and I both have in but present in entirely different ways. You wouldn't even think it is the same thing. If you are having any of these things you need to go the doctor as soon as you possible can early detection of many things is the key, especially involving your eyes

A friend of mine has spina bifida. In her specific case, this causes cerebral spinal fluid to build pressure in her cranial cavity. When she was little, the doctors installed a shunt on the side of her head (it's almost flat and completely under the skin) which connects to a drainage tube which drains either in her stomach or lower intestine (she can't recall).

Is this something that could help?

I am investigating surgical options. I do not think a shunt is a good option for me though. I am looking at another option at the moment.

Are you going to go ahead and buy all one color bra's and panties, so you won't have to worry about them matching?

I hadn't even thought about that being an issue. That's a really good idea. U/ButcherBoss asking the important questions.

I have this too. How did they diagnose it for you? I was told I had a brain tumor and had to go through a bunch of testing. Also, the meds given are horrible and make all my limbs go numb.

My vision was flipping upside down and my head just felt like it was splitting in half. They did and MRI and found 7 lesions in the white matter of my brain, which is just a fun way of saying dead spots. So they did a spinal tap to look for MS proteins. When they did the spinal tap there was elevated pressure. My mother also has it, but hers is so much different from mine so it didn't seem like the same thing. Then they sent me to a neuro-opthamologist who made the official diagnosis. The meds are the actual worst. If you are comfortable with it you should pm me and we can talk more about stuff.

What was your life like before learning about your condition? What was your biggest concern? What were your goals? etc...

My life was good. I was an average college student in my freshman year. I was double majoring in Arabic and International Security Studies and hoped to study abroad in Egypt. I wanted to work overseas, maybe in security maybe in diplomacy. I have changed my major because I don't feel comfortable going overseas with all the medical care I require now.

Do you have any of the risk factors for developing this condition i.e. obesity, smoking and use of acne medication such as minocycline? If so I've seen many people's symptoms improve just by losing weight/quitting smoking without the need for any medical or surgical interventions.

I am not obese, but I am a little overweight. I am working on that. I am a non smoker. I did take accutane, but I was off of it for months before I was diagnosed. My mother also has it.

Have you started to learn Braille? Will you get a service dog?

I haven't started learning braille. I probably will get a service dog.

Service dogs aren't very good at reading, so you should probably learn braille.

I know

When your blind, will the first thing you say be: "I see God. I see god dead. God hung himself. God is no longer with us.". If not what will it be?

Well, it will be a long, slow process so it I have no idea. I will have plenty of time to think on it.

Where are you getting your information from? I have worked in ophthalmology for almost 18 yrs and have never seen someone go blind from this

From my neuro-opthamologist

Maybe if you don't get treatment and don't lose weight. I've seen this many times

I am trying to lose weight. I am getting treatment as well. But it has been a pretty rapid progression.

What are you doing for the weight loss? Even losing 10lbs can make a big difference

Dieting. Working out is difficult when I am in almost constant pain, but I walk when I can. I am also on Topamax which makes eating pretty much the last thing I want to do. But I also don't have a ton of weight to get off. I am a little overweight, but I am not obese.