Just diagnosed with early stage AMD

[Rickatsea]

Hello everyone,

Just to introduce myself. I live and work in Edinburgh and I'm 54 years old. When I had my yearly eye test last week, I was unexpectedly told I had early stage AMD in my right eye. The optometrist just said to come back in a year for another test. He said in the meantime, just to eat healthily, take supplements and make sure I exercise regularly. Since then I've gone through various stages of anxiety and feeling quite down, thinking what will the future be like. I've also done a fair bit of gathering and processing information – the Macular Society has been really good as well as RNIB and reading this blog site has made me more aware and appreciating we're all at different stages. I've also looked at some up to date publications online. Everything seems a little different now but it's onwards in positive ways – keeping happy & engaged, improving diet, keeping active. Thanks for your words, best wishes and will keep visiting this blog regularly.

[LancasterLady]

Hello Rickatsea,

The uncertainty is tough, isn't it. Do get help for the anxiety and depression if it persists - your GP should be able to put you in touch with suitable services.

Glad you have found the Macular Society useful. It is worth looking for a local W@M group, which brings together people of working age with macular disease.

Good luck!

[Rickatsea in reply to LancasterLady]

Thank you for the advice, I think connecting with a group will be good.

Best wishes!

[Hidden]

Hi rickatsea, sending you a hug, diagnosis is a tough week!

Looks like you have the right attitude and your research has no doubt told you to check the amsler grid regularly in case anything changes and to act swiftly if it does (unlikely but best to be aware).

Good luck to you going forward.

[Rickatsea in reply to Hidden]

Thanks! I appreciate that, yes I check the grid almost daily. Best wishes.

[carolineJames]

I had the exact same diagnosis in July. EXACT! And I am also your age. However, I was given a referral for an OCT scan. The scan results were shown and discussed with me at the hospital. The Consultants flippant comments of "there is currently sooo little damage to the macular " were oddly helpful to my mindset. I now better understand the level of the damage to my macular in my right eye. It also gave me a definite measure for future. The optician can give you the referral. However, I believe it might depend on the region you live in if this is also available to you. However, if you have private health insurance it's a no-brainer! And very helpful.

[Rickatsea in reply to carolineJames]

Thanks Carolinejames for that. I'll get back in touch with the optometrist to ask about an OCT scan. I spoke with the Macular Society and mentioned the scan and they said generally there's a referral for that if they suspect it might be the wet form of AMD. Generally it would be good to know more and how early AMD progresses but everyone says it just depends on the individual's genetic & physical make up. Do you know if there's a general pattern when diagnosed in one eye, does it eventually progress to the other? I think it's just a matter of wait and see. Thanks again for your words, stay positive, keep in touch and best wishes!

[carolineJames in reply to Rickatsea]

I have this ghastly disease in the family. It eventually always jumps from one eye to the other it seems. It takes years to make the jump, but it does. Eat Kale and blueberries as these are Super-foods for the eyes and might just slow down the damage. Let's hope Prof. Coffey and the other clever people at Moorfields find a cure for us all soon. Their stem cell treatment seems to be leading the way for a cure. They are now onto their next clinical trial ... fingers and toes crossed for us all.

[Ayayay80]

Hi Rickatsea,

I too was dropped the bombshell of AMD (in both eyes) by the optician in June. I had not been aware of serious eye problems until then except that for the past two or even three years my new specs each time did not seem to make much difference to my inability to read properly. I was told it did not need any treatment just yet and to eat plenty of greens and come back for another eye test in a years time.

Reading up on AMD on the internet and checking out the Amsler grid the alarm bells rang loud and clear. My GP referred me to to the hospital. In August, when I finally got an appointment with an eye consultant I was told I have wet AMD in my left eye. It shows how quickly things can change. But we are all different, at differen stages of our conditions and of our lives. The one thing we all have in common on this site is that we support and encourage each other, share our experiences and help each other through our understandable anxieties. So keep in touch.

[Rickatsea in reply to Ayayay80]

Many thanks Ayayay80 for your kind words. It does feel like a bombshell has been dropped and I'm wandering around in the aftermath.

You're right to say we're all at different stages and it sounds as if you've been through changes in a short period of time. Hope you're getting the best of advice and planning – stay strong and it is good to keep coming back to this site.

[nanapat112]

Hi I have been recent diagnosed to.

nanapat

[Ayayay80 in reply to nanapat112]

Hi nanapat. Sorry to hear of your recently diagnosed AMD. I know it is a shock and a worry to get such news. Join the club! What stage are you at? You didn't say. Whatever it may be, we are all with you.

ayayay x

[Rickatsea in reply to nanapat112]

Hi nanapat, just to wish you well and hope you're getting good advice and information. Do keep in touch with people and us online. Best wishes.

[JimGlanDwr]

Like you I've been recently diagnosed. However I have not resorted to supplements as I'm a vegetarian and eat a variety of fruit and vegetables daily. We have made some adjustment in that We buy yellow or orange peppers instead of red. In a week we eat plenty of green leafed vegetables both cooked and raw, plenty of other vegetables and fruits of varying colours, many of them yellow or red, such as butternut squash or sweet potato and often snack on dried fruit and nuts.

I discussed supplements with my GP and he didn't advise against them but said as my fruit and vegetable intake was high I would be getting plenty of Lutein and other vitamins and minerals.

I do wear a wide brimmed hat most of the time even on quite dull days

[Rickatsea in reply to JimGlanDwr]

Hello JimGlanDwr, many thanks for the nutritional advice. I was vegetarian for about 8 years and enjoyed those days. I'm certainly now more conscious of my intake of fruit and vegetables. I've gone back to preparing a lot of raw salads and lightly steamed vegetables. It's important to thoroughly wash everything even when it says 'washed and ready to eat'.

I think your GP was right – with a good balanced vegetarian diet and a strong awareness of the recommended fruit and vegetables for AMD, supplements might be fine but may not add to anything. Let's all keep in touch though with any new developments, news, etc. Best wishes.

[JimGlanDwr in reply to Rickatsea]

Glad to have helped a little bit. But I'm probably as confused as everyone else.

[JFENTON]

Hi,

I am 56 years old and live in Ireland and just got an identical diagnosis and indeed similar reaction..

Is there anything else we should be doing apart from vitamins and exercise and is there a timescale in terms of rate of deterioration.Is there a possibility that the condition will not deteriorate?

Perhaps you may have got some answers to these questions .. Thanks!

[Rickatsea in reply to JFENTON]

Hi there,

Thanks for your reply. Since my diagnosis, I've been reading and re-reading all the information on the internet (Macular Society, RNIB, NHS, Allaboutvision, WebMD, National Eye Institute and others which come up both UK & US based) and I've got an appointment with my doctor to see how I can progress further in terms of getting a clearer assessment of things and if it's possible to know how long AMD will take to develop. My understanding so far, is that it usually develops very slowly and can take many years before it becomes troublesome but it all depends on the individual (state of health, heredity, genetics, etc) so we don't know. And yes, some say that it might not deteriorate further if you eat well, keep exercising and watch your weight, for example, the book I purchased online, How I beat MD in the Early Stages, Alan McClain, gives all round good detailed advice on vitamins & minerals, eye protection, good & bad foods... and of course to keep self testing daily with the Amsler Grid. Who knows! But the best way forward is to stay positive and focused, pester your doctor and optometrist, keep researching online – I find the more I know the better I feel but that might not work for everyone. Stay in touch, keep healthy and best wishes.

[JimGlanDwr in reply to JFENTON]

I think eat as much fruit and vegetables (and apparently egg yolk) that are high in Lutein as you can. There is some information on web sites but you have to filter it.

I'm like you, I've just been told it could be months or years. It's been five months now and I see no difference in my vision, I check it regularly with an Amsler grid. I've notified both DVLA and my vehicle insurance and can read a number plate over 20 metres away.

What really intrigues me is that in early June, is that like others I had black spots in the centre of my vision in both eyes when I woke up in the night. This was before I was told I had AMD. I put this down to going out one very hot bright day and forgetting to take my wide brimmed hat I did not realise it was AMD. I have not had these since. I suppose we have to wait, I just wonder how rapid once it starts is the deterioration. At least we've had the pleasure of sight for many years.

[Rickatsea in reply to JFENTON]

I forgot to mention: mymacularjournal.com

Mentioned by other people here. A great site, with lots of information and worth subscribing to.