Just been diagnosed with macular degeneration

[Raechel1972]

Hi. My name is Raechel and I'm 42 and I've been diagnosed with AMD. I went to Specsavers today and I was told I had AMD. I was in deep shock and the fact that they knew I had it since 2011 and I didn't know. I've got to keep checking my sight by using the Amsler chart. I haven't been told which type either.

[Hidden]

Hello Rachael,

first, what a shock for you, sending you a big hug x

im 4 months into my diagnosis of macular vein occlusion which id had for a year without realising and have just about gotten over the panic of it all. You are not alone, people here are lovely and will give you lots of support if you want it.

Second, get in touch with the macular society (they may well contact you via this forum but their web page is easy to find and has contact numbers and email plus a wealth of info on macular issues, they also have local support groups etc).

Third, Its vital that you know which type you have.

i would suspect its the dry type or the optician would (should) have referred you for treatment - ask them though (does seem weird theyve known since 2011 and not told anyone). You should also ask your gp to refer you to the eye clinic at your hospital for a firm diagnosis.

its early days I know and I so understand the worry and dread etc but try to stay calm, i found a good cry is very good at releasing the tension !

Wishing you all the best, good luck xxx

[AlinaL]

Hi Rachael,

It is a shocking diagnosis but let me reassure you that you've come to the right place for information and support.

I was diagnosed with wet MD at the age of 45 and remember the devastating effect it had on me. So I agree with the first post, give the MD helpline a call and talk to them. They were able to help calm my mind and to point me in the right direction.

It is important to know if it is wet or dry MD. So you need to speak with the optician again. If it's wet then you should have been referred, if it's dry they should have given you the info about dry MD, as yet there is no treatment for dry MD.

There are also groups set up by the MD Society for people of working age, where you can meet others who are also affected by eye problems.

So take some time to come to terms with the news, be kind to yourself and contact the helpline so that you have as much info about MD as possible, because if you're like me, you've never heard of MD before, let alone thought you might get it so early in life.

Feel free to send me a private message if you need someone to chat with online

Best wishes

[Raechel1972 in reply to AlinaL]

Thank u very much for your reply and support.

[Raechel1972]

Thank u for your kind words and support. And yes I've had a good cry lol. Seeing my doctor next week.

[smiler6044]

Hello there, so sorry to hear your news. It is fair to say that we are all shocked as heck when the news first hits like a sledge hammer and then we move to feeling angry and fearful for the future. The great unknown is very very scary indeed but we have found this Forum and the Macular Society invaluable. Everyone here has been in your position, or in my case is supporting someone with this type of condition.

Yes you need to get into the "system" and there is a lot of help out there to provide advice and support.

Good luck on your journey.

Best Wishes from The Smilers x

[BasiRose]

Hi Rachel, before you can truly grasp what you have been told, ask your doctor what type you have first. The dry type can be evident for many years and not cause any vision loss and not necessarily advance to the wet type. I have the wet and dry am being treated for the wet type. So the dry is not something you want to hear but it is getting common these days and just needs to be watched. If you have the wet, there are treatments and hope. I sure understand how shocking it can be and I've done a lot of crying myself. I am sorry you are going thru this now so stay hopeful and know we all encourage each other to help thru the tough spots. Good luck and best to you.

[cormorin]

Hi Rachael so sorry to hear how you were told that you have amd. This is fairly common as i was told 10 years ago that i had dry amd for 8years. The reason being that as everyone here says, we panic when told. So if it is only slowly advancing places like Specsavers check every year rather than worry us.

Not too sure which is best to know or not to know. I was given a copy of the Amsler grid & checked about every month until one day i realised i had wet amd. That was when major panic set in but after getting in touch with the Macular Society i received so much help i realised i was not alone.

So after your panic has calmed a bit talk to the people at the Society & talk to us on here as we are all here together & for each other.

If you have dry you may find it just blurs your vision a little over many years. If you have wet then you must be treated right away so please do find out.

Best of luck anyway, take care of yourself & try not to worry too much.

[Raechel1972 in reply to cormorin]

Hi everyone. I rang specsavers up and they told be it was dry AMD. And that I have had it since 2009. They did tell me to keep checking my sight by using that grid. And if there was any change to contact them straight away. I would like to say thank you to all of u who have replied to my post. Now it's just awaiting game 😞

[prometheusa3b]

So sorry for you, I totally understand what you are going thru. Please try not to worry to much. Get involved with MACULAR SOCIETY as much as you can, they helped me try to accept what it is. Good luck and remember you are never alone with MACULAR SOCIETY, best wishes xx

[sarahneil]

Dear Raechel

We quite understand that you should be shocked and yes you should have been informed back in 2011. We would advise that you check with Specsavers as to which type you have. You have been given good advice as to checking your eyes with the amsler grid and we would suggest that you do this once a week. Should you notice a sudden change with your eyes you should inform Specsavers. In some cases the dry condition can turn to the wet condition and this should be dealt with immediately.

Please ring the Macular Society Helpline for further information on 0300 3030 111.

Thank you.

Macular Society Helpline

[Rosalyn-helpline Partner]

Dear Rachel,

I am sorry to hear about your diagnosis.

As other posts have indicated, it is essential that you ring the opticians and establish which type they have identified.

In terms of the dry type, there are different lifestyle considerations that you can make which it is possible may help to slow down the progression of the condition a little.

In terms of the wet type, if this has been identified, then the optometrist should have done a fast track referral in the form of a fax to the eye clinic, to get you seen and treated, if applicable, within 2 weeks.

Please do not hesitate to contact our helpline on 0300 3030 111 or via [e-mail]

We have plenty of supporting information which we will gladly post out to you.

Kind regards,

Helplineworker

Macular Society

[Kiki20078]

Interesting reading. I've just had the review on my 5th Lucentis injection. An actual improvement at last! Got to have another jab.

I asked whether I had wet or dry and was told it was diabetic. So why is it important to know which one if they don't answer?. I cannot argue with them or insist because they know more about it than I do.

I was told not to have new eye tests for new glasses until I'd finished this treatment.

One last thing. I was under another clinic for my cataracts but last review (not this one) and he said they would look after them for me. The consultant I saw on Thursday said that they couldn't deal with cataracts while I still had liquid behind my eye. So do you think this could mean that I have the wet condition?

I always feel that I should hurry up as there are other patients worrying and waiting outside, so I don't like to push the point.

Chris of Cheshunt

[Hidden in reply to Kiki20078]

Hi Chris, as far as I know there is no treatment for dry, only wet. So the fact you are having inj means you dont have dry. Diabetic retinopathy is a separate thing I think ( or maybe just a diabetes related specific cause) check out the Macular Sociey webapge, they have info sheets on all the conditions.

re specs upgrade, I too was told not to bother until treatment completed as would be a waste of £ as probably need to change again. However, having waited months and treatment still continuing, the good eye was getting very tired so I decided to get the upgrade and am very glad I did. Its only money at the end of the day, being able to read easier etc is more important ! Also, I got reactolite lenses and am very pleased with them (from asda opticians, much better than my friend got from specsavers she stopped wearing hers as they were so slow to change but mine are brilliant).

I know what you mean about hurrying up but you wouldnt begrudge someone else taking the time to find out about their condition would you? Im sure they feel the same for you, you should ask all your questions until you get the answers you need to help you deal with whats happening and help stop the worry. Good luck with everything x

[VivienJayne]

Hi Raechel I can understand your shock. I had never considered AMD before I was diagnosed at 48. Though I realise that I had problems from 45 and saw several opticians who just sold me more expensive glasses with different coloured lenses. My dry AMD has been worsening very gradually over the last six years. Varifocal and transition lenses have helped a lot and I also have an extra protective coating to cut out some of the glare from car headlights as I am very sensitive to bright lights.

I have just been told my right eye is on the verge of wet AMD and that I should check my eyes with the Amsler grid every day - apparently only about 10% go on to develop the wet type so I guess I have just been unlucky.

I am very relieved to have found this blog as I don't know anyone else of working age with AMD and I am hoping for some advice and help too.

Do give the Macular Society a ring - they are very considerate and caring.

[EllenSaul-1]

Hi rachael, i have had the same thing happen to me. I went to specsavers 2 weeks ago forcheckup and was told i had AMD. Said it showed 2 years previously. They did not tell me either. I am very frightened of what is going to happen. Will we be able to get about on our own, do housework, cooking etc. General things like makeup etc. I am waiting for hospital appointment may take weeks so i think i may have dry amd. Optician said wear sunglasses when outside and vitamins. Let me know how you get on. Ellen