I think I am in a state of denial, and am joined there by some members of my family. I can't believe it can be true. I can't believe that I am going to lose my central vision. I can't believe I'm eventually going to have to stop driving. I am disabled and have Agoraphobia and driving is my only way to access the outside world. i can't walk or use public transport so I will be held hostage by this. And then I think perhaps not everyone with Macular Degeneration loses their vision. Perhaps all will be ok after all. I am clueless about what is happening. The consultant was rude and dismissive and said "Oh just Google it!" I feel pretty lost and alone. My lovely GP admitted she knows too little about it to help me; my pharmacist who the consultant said to ask about Vitamins (I'm already on prescribed vitamins and wondered if more were necessary), said she didn't know and it should ask my optician. I've made an appointment but am not holding out any hopes of being enlightened. So I'm begging you for help. I'm 45, live alone and I'm scared. Is it certain their diagnosis is correct? Is it certain that I will lose vision or do some people escape it? Please help me. Sarah

34 Replies

  • Hi sasal, it's such a scary time when first diagnosed and you can only think of the worst case scenarios. You haven't mentioned if you have dry md or wet md. I have the wet form in one eye (diagnosed August last year). Have received 3 injections - I'm still working, driving, reading. Changes are happening in my other eye but I'm now confident that if and when treatment is required I will pretty much get on with life as before. I no longer feel so helpless or alone. There's loads of information on macular society website. Every one is different though but I hope that this has helped a little. You should phone the helpline and speak to someone - they will be able to advise and help put your mind at rest. Best wishes to you. Ax

  • Should have said - at my 3rd visit trying to convince them that there was definitely something wrong with my eye/vision - my optician told me to 'chillax' :O ... then found the bleed. :/

  • Thank you for your reply... I have dry MD in both eyes and this is why I'm wondering if my deteriorating vision is really certain to continue unchecked? Am I over reacting? The consultant seemed pretty sure that with my condition which is thinning my retina that eventually it will lead to tears in the retina.

    Thank you for your reassuring reply tho... I'm so glad that life is continuing for you with Macular Degeneration... and even driving 😃 That is the killer blow for me as I've said.

  • Hi,

    I am assuming that you have wet MD in one eye, I feel that you were not guided correctly by your consultant. Firstly you will not loose your eyesight because it is a treatable condition.

    I suggest the following:

    Ask your optician or doctor to refer you urgently to an MD clinic for analysis and treatment.

    Become a member of Macular Society, you can phone them they will guide you guidance and answer

    all your questions, they are experts in this field.

    I went through similar fear few years ago, I am getting injections in my eye and my vision

    have stablised and improved slightly. I work on the computer daily as part of my job, it's all


    I hope this was of some help.


  • Thank you for your reply Surjeet. Unfortunately I have dry so at this stage it is not treatable and I don't know if it ever will be or my eyesight will just gradually deteriorate til I've lost my central vision by degrees. I agree I have had poor/no advice yet which is why I am in such a panic. But I have an appointment with my sensible optician next week when hopefully things will become clearer. I'm glad to hear that your eyesight has improved to te point you can use te continue to use the computer every day. Thanks again!

  • Hi sasal,

    just wanted to send you a hug x

    i agree the Macular Society are the people to contact and their website has lots of good info.

    its important you know exactly what you have been diagnosed with then you can begin to take control of your fears as you will be able to get the right info.

    i get the fear, i felt panicked at first, was googling talking books etc as cant imagine a life without reading.

    its like a bereavement ( had a few of those) and although its bad at first you will come out the other end once you get the info and can start to plan and envisage a future. I do hope you are able to have treatment.

    re the vitamins, for some condition theres AREDS, google it , also on the macular society webpage i think.

    Sounds like you might benefit from counselling or cbt too, ask your gp. I have found it useful in the past.

    Wishing you all the best, know that you are not alone x

  • Thank you so much for your hug and helpful reply. You're right it is like a bereavement or feeling like a terminal illness... the death to my old life I suppose. I totally agree about books... that and driving are my life and rethought of life without both is unimaginable. I have an appointment with my optician, who is very nice, next Wed and hopefully she can explain my condition properly to me. My GP is almost like my councellor and I've spoken to her and I know she'll continue to be supportive. Thank you again... It is so nice not to feel like I'm doing this my own. X

  • Hi Sasal do not panic there's a lot of us out here

    With the same problems some worse than others you can get through this and live a reasonably long and happy life once you finally

    A just and check out what you can and cannot do

    You will wonder what all the fuss was about trust me I am now coming up to my 77th birthday I have had MD for almost ten years and for six of those years had been driving a London licenced

    Taxi and one of my Hobbys is oil painting am now retired and do lots of things including gardening serving on two committees join the Macular society with bags of help don't sit in the corner wondering what's going to happen to me

    "YOU WILL GET THROUGH THIS " good luck and keep in touch. Al.Gee

  • Hi Sarah I totally understand what you are going through, please contact Macular Society they saved my life. My situation is similar I have bilateral dry AMD but I had a idea about 6 years ago my eyesight was slowly deteriorating. You still have a life. Please don't worry or stress too much about it, Take care x

  • Thank you... you are all so kind here. The only issue I have with the Macular Society is that I am unable to use the telephone. Do you know if they have email advice system? So did you mean you were 6 years having symptoms before you discovered you had MD? How are you now if you don't mind my asking..(and please ignore that part if I've overstepped the bounds of etiquette as all support forums are different) 😕 Thanks! Sarah

  • Six years ago or more I can't remember they tested me for glaucoma because of high eye pressure then in 2009 the consultant at eye clinic found a bleed and asked if I had had a stroke, I hadn't and thought it strange but tried to forget about it. Then in 2013 I had a new optician and she photographed my retina, referred me to eye clinic for umpteenth time and I was finally diagnosed with dry AMD by a very abrupt consultant, It seems he though I was already aware of my condition. It was a terrible shock but I have accepted it and my eyes are fine but I take 1 day at a time. Best wishes x

  • Gosh that's really awful, that you could have a bleed and still not be given a diagnosis. 😟 So similar too that we both had abrupt, dismissive consultants who assumed we were mind readers who knew what no one had bothered to tell us. I'm so glad to hear that you're doing ok now though.

  • Hi sasal, on the webpage homepage scroll down to the bottom, there is an email address. Also, up on the right hand side of the page is a membership place you can put in your postcode to find your local group.

  • Great, thanks for that 😊

  • Hi, NO it is NOT necessarily the endgame you fear here: Medical advances for ArMD are coming so hold on to your hope. YES to vitamins; I asked my eye surgeon if I could use the cheaper Areds2 vitamins and he said I could BUT the studies conducted with the vitamins showed that the B&L Areds2 showed the best outcomes...there are coupons not only On-line but from BAush and Lome on their website.

    Remember this, its helped me---people are rude and dismissive when they DON'T KNOW THE negate that and stick with those who are REAL Physicians.. AKA Healers and not Doctors who I term as professionals who are in medicine for the money.

    IMHOpinion....there is a huge difference, a healer listens to s/he patient and does their job. Personally I haven't the TIME for idiots.

    THERE IS HOPE, I am also fearing losing my ability to drive my Trusty-Rusty-Toyota...already I cannot drive at night..I am trying to ADAPT and greet this new Dx (Diagnosis) as a challenge to my Spiritual growth (I am a Paegan) if religion is your thing then get with your spritual guidance person..priest whatever.

    For me getting in Nature is my strength.

    Hope this helps

  • Thank you. I see I clearly need to do my homework on the vitamins... what are Areds exactly? I have spiritual/ religious beliefs but if I'm honest I'm so angry with God at the moment because He seems to be sucker punching me again and again so that even family and friends are stunned. I have to believe that there is a reason for this and I'm doing my best but it's hard. But I too have wondered whether there is something I have to learn from this on a spiritual level... That's pretty much all I've been thinking about to be honest. Thank you and I shall check out the Bausch and Lome website.

  • Dear Sasal, I am sorry to be so late in reply; I discovered that I have to limit my time @ the computer as the blue light it emits is effecting the sight in my good eye--thus my late response.

    The name Areds, I believe, is just a brand name or a name the researches came up with for the specific combination of vitamins used to 'treat' ArMD--specifically. Apparently there have been many tests on patients with AMD and the results were very positive inasmuch as the combination proved, with empirical evidence, that the combination slowed the *expected* progression of the disease.

    To the Spiritual test/challenge or however one chooses to approach this--well what you are experiencing is spot-on to my own now and in the past while going through far worse than this...and is why I turned to my Spiritual beliefs in Nature; you see I am Paegan in the truer sense as I chose the Path of the Feminine--that is pretty ancient so f I confuse you with this I am sorry.

    In short; the God I grew up with -- Christian Anglican (US not UK) turned from me but in doing so it opened the path of discovery and knowledge that this earth bound experience is not Christian or Buddhist or is just discovery.

    The opening of the mind for me a new world to explore. The so called teachings of Christ, as I learned them, did nothing but confuse me-- much like where you are now..kinda lost -- so I opened my self to the Spiritual and for me Nature is it.

    As tree sprouts from the breadth of an older tree, the small tree grows into a big tree which will sprout another tree. And once that tree dies -- it continues to live on and in fact even in its demise it will come feed the the tree never really dies.

    Sorry, I get poetic about Spirit and I am a writer by trade so I tend to wander as I think of tests and trials. I don't think that we come to know the whys in this life..I too have friends who are astonished that I am facing yet another medical illness.

    I get very mad, I cry and I go on.

    I spent 35 years as a well respected, awarded and collected professional was tough for me to turn to digital photography some years ago (I still hate digital and prefer film cameras) now this -I am losing my eyesight...its a bitch.

    However, I am grateful to have a very clear and vivid visual memory--so I as I lose my sight I have those memories to rely on.

    Hope this helps,



  • Thank you for this... I haven't had chance to read this yet but will today. At brief glance it looks really interesting. 😊 Hopefully it will answer some of the questions I have floating round my poor head.

  • Its true that people are dismissive and rude when they are ignorant of AMD. People are frightened and complacent. There should be a lot more awareness and advertising of this devastating condition.

  • I wrote an article for the newspaper I use to write for..and I talk to people about it whenever I get the chance.

  • Hello Sasal. The first thing you need to do is find out exactly where you are now - stable, perhaps. You won't know if you don't insist on finding out. Go to an optician, an independent or a small chain. The large chain opticians have limited time per patient and can't take the time to explain. My GP calls them the "MacDonalds of the optician world". From what you say of your circumstances you will qualify for free testing, I think, but check first. Read everything you can, there is a lot out there on the subject. Arm yourself with knowledge, GPs seem not to know much about it. Your optician, when you find a good one, can look at your prescribed vitamins and other medication and advise you on supplements. Use the Macular Society and this supportive site.

    I recognise, in your message, exactly how I felt when I was diagnosed two years ago but my fear wore off, especially as my md has not deteriorated. Perhaps yours hasn't. I am still driving - my necessity as well. I have chosen not to drive at night because I find the glare of oncoming traffic slightly uncomfortable, no worse than that. Make sure you have the right glasses for driving. Mine made a huge difference. Try and remember that deterioration can be very slow.

    Please accept my sympathy and very best wishes.


  • Thank you. I do have an appointment at a chain optician who I do like and though she is young she is serious and committed I think. I will try her but if I will certainly do as you advise and seek a more independent one for better advice. My GP is really lovely and supports me brilliantly through my health conditions but she admits to being clueless about this. I don't blame her as she would help if she could. It is good to know that your condition is pretty stable and does give me hope. Thank you so much for giving me some hope!

  • Hello.I would just like to give you a little reassurance.Maybe even a little hope too. I know how terrifying this whole macular thing is. I have been going through it and I am 'only' 38.It is a horrible thing.

    But ,and this is a huge but , there is real genuine hope. The injections do almost always work. This means you really do have an excellent chance of keeping most of your vision and all the positives that come with it.. Sometimes it can even improve a little. The hospital staff are wonderful. The care is great and the stuff they inject you with is amazing.

    How do I know this? I have had three injections in my left eye. So far they have worked perfectly and , again so far ,I have had the all clear after every check following the third injection. That was over six months ago now. I just keep going for my check ups and hoping its okay. I still worry sometimes but can only be grateful for what I have had so far.

    Don't give up and stay strong. Remember treatments are improving all the time.

  • Thank you for your reassurance - 38 is such a young age for you to have this. I think you're amazing to be so upbeat.

  • Hi Sasal

    I had an awful experience with my Medical Consultant, sounds like you did too.

    In the end, as I became so anxious, my GP suggested I ask for a second opinion, and he wrote to the nearest University Hospital, and they did all the tests again, and talked me through it properly.

    I suggest you do the same - it is amazing how different the 2 experiences were.

    In my anxious stage, I learned a few things that I found a few things REALLY useful, I hope you do too:

    1) I had had a shock, equivalent to a bereavement, so I went through the stages of Shock, Anger, Denial, Grief, Acceptance

    2) There is no-one in the Eye Health world willing to give an overview of how long the totality of all patients measured take to significantly lose vision, for either dry AMD or wet AMD, even though the total statistics are known somewhere. I wanted to have an estimate , and all ANYONE will say is 'every case is different' (even the leader of the AREDS2 research program in America).

    3) It's really worth looking up the AREDS2 research, I am now taking Viteyes 2 formula from and following the Macular Society suggestions on nutrition and exercise - it's all we can do at present.

    4) Keep an eye on (I know!) the latest news on research for medical advancement in this field, it gives us hope for the future!

    5) I joined the Macular Society (just £18 per year) - you get a LOT of help and support.

    7) I adopted the philosophy of "Plan for the worst, and Hope for the best" - it really helped me.

    8) I found out about volunteering in my local area to help out with Guide Dogs for the blind

    9) I signed up for Sponsor a Guide Dog Puppy at - I wanted to set up a relationship with the organisation so that if I need the services later on, it won't all be new to me

    10) I found out everything I could about the condition, so I felt I had taken control as much as possible, I knew what to expect, just not how much or when.

    11) Here is a link to my list (on a shared drive on DropBox - let me know of any problems following my link) of the various resources I discovered, some are local, so you will need to find out your local version of the same thing.

    (Follow the link, and click the Download button)

    12) AND FINALLY - Best advice - Dance a lot, Live a lot, Live life to the Max !!

  • Thank you, what a wonderfully helpful response. I've managed to change my appointment from the horrid consultant to another one (hopefully not horrid) but it's some time til I see them. I'm speaking to my GP about vitamins today as I'm already on prescribed ones so have to make sure they don't overlap. And I'll definitely try to look at the resources you mention... and take your final advice too! :-)

  • My pleasure, I am just glad to be a little help

    X David

  • I also found the following 2 resources very useful

    Ongoing Macular Society Research and activities, very reassuring

    25% - 30% less likely to develop later stages of AMD using the areds2 formula supplement I mentioned above

  • My dad is 65 and had dry macular degeneration. He used to say that he notices blind spots in central vision sometimes. This appears only on later stages if left unnoticed or for those who don’t take regular checkups. Luckily his was curable, and cured with a laser eye surgery at Evergreen Eye Center in Washington. Now he has normal vision and also he is confident on driving unlike before.

  • Oh that's interesting... I'd thought dry was untreatable so that sounds good news. Thank you!

  • Hi Annie576 I didn't know laser surgery treatment cured dry macular, I thought it just slowed down the progression.

  • Hi Sarah! Dont be scared. There are new treatments on the horizon so keep the faith. Dont ever lose hope. I am suffering from myopic macular degeneration and had many many injections. Some good results some not so good. I dont think about losing the central vision. Why? Hopefully that day will never come, but I'll deal with it, if and when. For right now, get as much info as you can and just stay hopeful. So many of us suffer from this and still lead productive lives! You can too. It can stop too, lots of senarios. Just dont think about the scary stuff, I dont and that has helped me cope. Hope it helps you too. One day at a time Sarah, thats all we can do anyway.

  • Thank you for your positive reply. You are right of course, there is no good that can come of pre empting the situation. I blame the internet and such easy access to detailed information on the worst case scenario. I am trying to take one day at a time but because I am more conscious of diet, eye vitamins etc it is never far away from my mind.

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