Hi /u/leakyBuffer, you have joined a very elite club with lots of friendly people. :-) And we get it.

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First, yes, absolutely get to a specialist. And by specialist, I mean someone specializing in degenerative and genetic eye diseases, preferably associated with a teaching hospital and with cutting edge research.

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Here's why. A LOT of retinal specialists have zero experience with the rarer diseases or odd presentations of diseases... and they are incorrect with their information.

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For example, I went to a retinal specialist (best in the city) and after a long exam, they couldn't really say if I had Retinitis Pigmentosa or not, but if I did I'd never go blind, because I was older (in my 30's).

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Then I went to an RP specialist in another city, someone who in a leader in genetic research. In 2 seconds, he looked at my eyes, verified it was RP, and of course, gave me the correct information. RP is a degenerative disease. It gets worse. I've been legally blind for 5 years now.

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It's quite unusual to be diagnosed with MD... with no real symptoms of it. Also, the test you took... if it was the perimeter machine with the lights that flash, and you click every time you see a light (Visual field test), they are typically calibrated to check only the center 30 degrees of vision.

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So, if you have a deficiency, all they checked was the center (macular), and a bit of peripheral, which is great if all you're looking for is MD. ;-)

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So, Make sure to ask your second opinion specialist for the Goldmann perimeter, which measures 160 degrees horizontally and 120 degrees vertically. (Or, ask for a Humphery Field Analyzer that's capable of measuring the full field like this.)

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Right now, you're just in the process of gathering data and seeing if the doctor you went to was accurate.

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If it turns out you do have MD, ask the MD specialist for information about the specific presentation you have, as well as insight into the most promising research being conducted right now for MD.

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MD is one of the most researched diseases on the planet. There is good scientific reason to be confident of medical solutions appearing over the next 10 years. It's pretty easy to stay abreast of the current trials and research on the internet, if you happen to be a research junkie. :-D

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Here's an article you might enjoy about the latest research: $1

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(And be very careful about jumping onto something like high dose of cholesterol meds without solid research findings, and you'll want to coordinate that with you endocrinologist, obviously.)

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TLDR: Until you have a second opinion by and Macular Degeneration and genetic eye disease specialist ,your job is to not panic. ;-)

I'm much older and so sorry that this is happening to you. Be sure to get on the Facebook Macular Degeneration support group sites. There's a couple different ones but just do a search and they'll pop up. I'm fairly new to all this and I'm finding the information extremely useful.

I was born with a very rare (1:100,000 people) condition called aniridia. The disorder consists of an entire assemblage of pathologies and involves widespread abnormal development of many structures inside the eye, all of which can impair vision. Aniridia comes in different levels of severity but in my case the overall condition is particularly. Macular degeneration is one of the things that frequently comes along with aniridia and it's also been an issue for me.

I already had low vision when I was born, which is typical for my disorder. When I was a baby, I had about 30/100 vision. Nowadays this frankly sounds like superman vision to me. I can't believe I've ever seen that much. Over the course of my childhood/youth, my vision kept decreasing, which is also a typical development (aniridia is, as of now, incurable). When I was 14, I pretty much lost my left eye as it went completely blind. I don't even see light and shadow anymore there. My right eye went through a period of stagnation, which I was incredibly happy about. All the doctors originally thought I'd be completely blind around age 20. I'm now 30 and within the past three years I have gone through an incredibly tough time of losing pretty much all of the remaining vision. My vision now hovers somewhere around 2/100.

I wanna tell you two things. First of all, I'm very sorry this happens to you. Speaking from an entire lifetime of experience, there's hardly anyone who knows as much about how painful it is to lose your eyesight than I do. However, I strongly advise you to not play strong toward your family. Don't do this Walter White thing where you go around pretending everything's just fine. Your partner and your children have to know about this, even if it will worry them. Sooner or later it's going to happen anyway. You already have enough to carry on your own, don't worry so much about how everyone else will deal with this. What's most important is that you're not going to break as a result of this and for that you need people you can trust and talk to. I'm married and my wife knows about everything regarding my eyes. It would never work otherwise. Sometimes I feel like total crap and I need her to comfort me. She's been a my rock throughout the past years and I could have never made it without her. Moreover, it's important to tell your family about this so they can understand your situation. For example at one point you will need adjustments in your daily life and you will want people to know why these adjustments are necessary.

The other thing I wanted to tell you is a message of hope. Unless you are surgeon, which would indeed be very unfortunate, there's almost no job/career that you will have to give up. Blind and visually impaired folks work in many different careers. Thanks to modern technology, there are a ton of accessibility-related adjustments that can be made and new skills you can learn. Also, I can tell you that while losing vision is unspeakably tough, there's also a light at the end of the tunnel. I'm saying this as I'm slowly starting my overall psychological situation to go up again after 3 years of total darkness. I'm still a far way from being content and happy in life but I can feel that one day I will be. Losing your vision drastically changes your life but your life will still be worth living. I still cook, I still travel, I still write and read... and I'm currently thinking about new hobbies that I could take up... maybe pottery would be cool to try out.

Yes, me. 38 F. I was born with retinopathy of prematurity, which has increased my risk of all the diseases commonly found in middle aged & elderly adults.

My first & second retinal surgeries were at 18. Then cataract removal at 23. Third & fourth retinal surgeries around 31. At 37 I was diagnosed with moderate glaucoma & last year my retinal surgeon casually mentioned myopic macular degeneration ( mimics dry AMD).

He said I have probably had it for the majority of my life. His only suggestions are to take the AREDS2 vitamins, watch & wait. I have noticed a significant decrease in vision in the last year and a half. I have always been very nearsighted, but now I am starting to feel low vision. I, too, am hoping my degeneration is as slow as it has been so far.

This is just an educated guess, but I think that the cholesterol drugs work because the drusen (yellow fat deposits visible with AMD) represent the clogging of the tiny blood vessels in the macula. I eat a lower fat plant based diet & try to drink a green smoothie (as an adjunct to the AREDS2 vitamins) most days of the week to reverse/ prevent further clogging. I hope this makes sense.

Welcome to the club. I have a fancy thing called lhon that hit me at 20 and took away vision in one eye and half in the other. 7 years later vision hasn’t changed. I take super good care of my eyes and try to exercise and eat right. Mine is more the nerves behind the eyes, but my docs always say don’t ever smoke and don’t drink much. It’s a scary thing, but this is a good community to help calm some nerves. Hope it all goes well for you.

I got diagnosed with retinal dystrophy at age 33. Started with wavy vision in one eye. The other eye used to be the good eye. Today I am 41 yrs old. The good eye is now twice as bad as the first eye. Still have central vision in both eyes but everything appears to be distorted. Colour vision is almost gone, contrast vision is very poor. Can barely see faces in dark. When I drive, I have to continually adjust to changing light. Not sure how much longer I will be able to work or drive. I work in IT and computer accessibility features are the only hope. Life is becoming more and more challenging everyday. Fear of losing vision is a continuous scare I have to live with. So much uncertainty. There is no hope because there is no treatment for this condition.

Following as my relative also got the same .
She is in 30s.

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Any updates?

I was diagnosed with MD in 2016 when I was 26. It has been getting worse ever since. My eyeballs started shaking rapidly when I concentrate on something. Which is annoying especially when reading. I use dark mode and magnify tool to make it a bit easy. I only drive at night time with extremely low speed.

I've never talked to someone with macular degeneration at young age. I'm curious as to know if you have been experiencing the same symptoms.

Is it me, or does the AREDS 2 supplement really cause a lot of dreams? I've noticed ever since I started taking it that I have multiple dreams a night. Only thing I can think of that has been different is that supplement.

Hello there. I'm not 30 but late 50's and last year was diagnosed with MD in my left eye. It was wet MD. I have been receiving injections into the eye since last year and am doing treat and extend now.




The doctor said he wants me on AREDS, and to eat dark greens daily. I try my best to either eat a serving of dark greens daily, but that doesn't always happen. What is easiest is to keep a bag of prewashed chopped kale or spinach in my fridge. I make a smoothie every day almost. I use a Nutribullet - it really works better than a blender and I mix in nuts, berries, avocado or banana, some cinnamon for blood sugar, a quarter tsp turmeric, and some Kyogreen and ground flax seed. Mix it all and have it as a snack or a meal!




I'm interested about the cholesterol comment and about the responder's comment about cholesterol. Mine has been high for years, even when I eat very well. Now I wonder if that is a contributor and if my eye veins are clogging what about my other veins?!

Not MD but I get these lumps growing on my cornea called Saltzman’s Nodules. Started when I was 30. Very few years I have to go to a special clinic to have them use a tiny ice cream scoop looking thing to scrape the nodules off. So much fun.

I do have a family history of MD and will likely get them when I am 70 which is five years after I will probably have the stroke that also runs in my family,

OP, you might read up on Stargardt’s Disease as well. It usually presents in childhood, but it can happen in adulthood/middle age sometimes. And yes, definitely see someone who specializes in macular degeneration! Good luck with this!