Macular

[Suejoyce]

Told by opticians he see dry macular in both eyes referring me to hospital I am really frightened can't eat or sleep anyone else feeling like me

[rosyG]

It's good that you are going tp be seen in hospital so they can check carefully . If it's dry AMD then you will need advice rather than treatment- if it changes to wet AMD we are lucky in that they now have treatment for this- so do try not to get too anxious.

Good luck and let us know how you get on

[Suejoyce in reply to rosyG]

Ty

[Suejoyce in reply to rosyG]

Hi rosyG how long have you had this eye problem is yours dry or wet and how are you copying

[rosyG in reply to Suejoyce]

Hi Suejoyce

I have had dry AMD for about 8 years and it has only got a little worse.

I have a branch vein retinal occlusion at present and am receiving the same injections which are given for wet AMD and are very effective. Incidentally, if you do have to have injections, whilst unpleasant, they are not nearly as bad as the thought of having them!! Please don't worry but make sure you get an urgent appointment if you have any sight problems- just go to A and E- preferably at a place where there is an eye unit

[Rufuscat]

Hi, I'm in a similar position to you. Have a hospital appointment in July and told to use an Amsler grid every day while I wait. I too was having trouble eating or sleeping for the first couple of weeks. I changed my diet and started taking Macushield.

Feeling calmer now but still hoping it's a mistake!

[Suejoyce]

I hope it's all ok for you i am trying to eat the right foods to have you noticed a change in your vision

[Rufuscat in reply to Suejoyce]

Hi, I'm really not sure. The little line that can bend seems to not always be there but there can be a small hazy area. I'm going to keep doing it and go back to optician or A and E if anything else happens. At first I was constantly checking my eyes, and there are probably a few people around who think I was winking at them!

[Hidden in reply to Rufuscat]

Hi rufuscat, just to say, if the hazy area is new or gets bigger even if the lines don't bend I suggest you speak to your eye clinic without delay just to be on the safe side x

[Rufuscat in reply to Hidden]

If you get changes on the chart, do they usually stay fairly consistently? While I'm looking it can come and go- a bit confusing!

[Hidden in reply to Rufuscat]

Hi. I think it's differences from day to day that matter. If my eyes are tired or my specs aren't on straight, or I'm not looking dead ahead then it can change as I look at it too.

I mark mine in pencil so I can tell if one day is worse than the previous.

At the end of the day you have to go with your gut and its better to bother the eye clinic and have them tell you you're ok than leave a problem to become worse and possibly irreversible.

Have a chat with the Macular Society if you're worried.

[Hidden]

It's natural to be worried and its easy to say but worrying won't help x give yourself the rest of the week to worry then make the decision to get on with enjoying life. Don't waste time spoiling things for yourself, could get hit by a bus next week!

Seriously, I do get it, I cried for 2 weeks but you have to focus on the positive. You are still breathing and able to walk around and see this wonderful world x

Whatever is going to happen is likely to take years but if you live in a constant state of distress you may cause yourself other health problems.

Wishing you all the best x

[Suejoyce]

Ty

[Ayayay80]

Hi Suejoyce

It is only natural to be frightened when the bad news hits you like a brick. The mentioning of your fear brings back the memories of what I felt when I was first diagnosed. Most of us on this site have gone through all of this and worse. We still have our moments from time to time now. But it is not necessarily as bad as we had at first thought. Of course, you must check your eyes on the Amsler Grid - not 4 times a day as I did frantically at the beginning. If you notice any changes you must act and get advise. I am glad your optician has referred you to the hospital - not all of us have been so lucky and had to fight to be seen by an opthalmologist. You'll be able to find out what is going on. Make sure you write down the questions you want to ask the consultant and take the slip of paper with you. Usually we tend to forget what we have meant to ask until after the consultation. One more thing, if you have dry AMD, you may well be alright for many years to come, but at the same time, be aware that the change to wet AMD can occur suddenly. So be vigilant. And good luck!! x

[Suejoyce in reply to Ayayay80]

ty

[larfalottie]

I am in a similar position too and newly diagnosed as well with dry MD. Macushield Gold, watching diet and, with no hospital referrals, that's what's there is to work on. It's still hard to grasp or even begin to accept, to not dwell on the outcome, and, yes, sleep is more than a bit rubbish!... But these first steps out of shock can go at a gentle pace and we need not beat ourselves up at not having a handle on it straight off. Please keep in mind not everyone diagnosed worsens a lot in condition or goes on to sight loss x

[Suejoyce in reply to larfalottie]

Hi nainis hope your ok why have you not had a hospital referral

[larfalottie in reply to Suejoyce]

I'm okay thanks... I am told dry MD is not referred to a hospital. details were faxed through to GP to have on record, that's it

[Suejoyce in reply to larfalottie]

That's good we're do you live

[larfalottie in reply to Suejoyce]

Wales

[Rufuscat in reply to larfalottie]

Hi, I was told they were only going to refer me because she thought I was a bit young. I suspect the fact there was some distortion on the Amsler grid might have led to it as well though.

[cormorin]

Ring the Macular Society & talk to them. They can arrange for someone to talk to you regularly for a few weeks to help you get your feelings under control again. This saved my sanity as I was terrified when first diagnosed & had massive panic attacks. Knowing that every friday I would have someone to talk to really helped. I still get panicky sometimes as we all do but having this site & Mac Soc to talk to really helps.

Good luck & sending you a hug hoping it helps!

[Suejoyce in reply to cormorin]

Ty how are things with you now how is your eyesight hugs to you

[cormorin in reply to Suejoyce]

I've had wet amd in both eyes. After a series of Lucentis injections in my right eye the sight is good now considering how bad & scary it was at the start.

The left then got wet amd & though Eyelea has helped stop the bleed my sight in that eye is not so good.

My Consultant is great though & says each eye is different so I have my fingers mentally crossed nothing bad happens again.

I can still see to read so big plus there!

Take care!

[Suejoyce in reply to cormorin]

Ty take care

[Rosalyn-helpline Partner]

Dear Suejoyce,

Please contact us on the Macular Society helpline to discuss your concerns.

Just to make you aware, the impact of the diagnosis of any eye condition and indeed any stage in the process is generally compared to experiencing bereavement. Individuals frequently go through very similar feelings and responses and in no set order. We do have a free telephone counselling service. Please contact us for further details if this is of interest. We need the individual’s verbal consent in order to be able to refer them. It takes a counsellor a maximum of a week to make the initial call. Our counsellors are fully trained and the majority have sight loss themselves. Sessions consist of approximately 6 of around 45-50 minutes each.

The Macular Society helpline is open 9am – 5pm Monday to Friday on 0300 3030 111.

Alternately, you can contact us via:

[e-mail]

Kind regards,