Help needed please.

[Lizjim]

I was recently diagnosed with Macular Degeneration(wet). I am a woman aged 75 ,reasonably fit and healthy. I wear glasses for reading and had cataract surgery in both eyes in 2015, apart from that my sight in both eyes is good. I was recently diagnosed with Macular degeneration(wet ). It was discovered during routine eye test when optician found haemorrhage in my right eye and referred me to eye clinic. The doctor said bleeding had dried up and as yet I have no deterioration in my site, so she felt it would be safe to leave it meantime. I was given no appointment for further treatment or investigation , only told to get in touch if my sight should deteriorate in any way. I was so shocked at the diagnoses that I could not think of any question to ask. I have now researched condition for myself and am left fearful of the future. I would welcome any help or advise, for example should I have eye test more regularly than once a year as I have had in the past. I would be so grateful for any correspondence,

[kalahuchi]

We never think of the right questions to ask until we're back home do we? Our eyes are all a bit different but I am surprised that if the diagnosis is wet AMD that you are not having regular follow up appointments to keep an eye on things, if you'll pardon the pun. In your situation I think I would be giving the Macular Society a call on Monday; they really are very helpful and will point you in the right direction, or you can just have a chat with someone who really understands what you're going through. Also your GP could help explain your condition to you as he or she will have had a letter from your consultant and will know more about your personal situation. You can download and print off an Amsler Grid to keep a check on changes to your sight at home regularly.

It is wonderful that your eyes have stabilised and natural that you fear the future; we are all in the same boat I am afraid. I have had MD since childhood but it was stable for many, many years and took a turn for the worse just over a year ago; first one eye and then the other developing wet MD. I have had treatment for mine which sounds awful, but after the first 3 injections I started to feel calmer and it is now much easier to bear. I went to clinic on Friday and it was the first time I have gone a whole six weeks since my last injection and I only need another monthly follow up in clinic and not another injection, so perhaps my eyesight is starting to stabilise too.

All I can say is that some people are stable for many years but if your eyesight does deteriorate, or if you are unsure, don't wait. Get your eyes checked out immediately because scarring can happen very quickly if things are left. If anyone had ever told me that I could get used to this awful treatment I would never have believed them in a million years, but after my first injection I gained 5 whole lines on the eye chart almost overnight and cried with joy to get my eyesight back so it was well worth fighting my fears. Good luck and keep posting if you have any questions; there is usually someone who has had a similar experience. Sending a hug and best wishes, and try not to be too alarmed by what you read on the internet; a lot of it won't apply to you x

[Lizjim in reply to kalahuchi]

Thank you so much for taking time to reply, I will follow up on your suggestions and make appointment for G P to start with. I have already downloaded the Amsler Grid, and will use it to check my sight. I am just so glad to have found this web site as I feel I am no longer alone. I feel so much better just having talked to someone who understands. Again many thanks X

[kalahuchi in reply to Lizjim]

We are all here for each other every step of the way. It would be great if you could let us know how you get on and I'll be thinking about you x

[Ayayay80]

Hello Lizjim. I understand fully that you are concerned for the future. It is all so scary when you get the diagnosis. We have all been there and know how you must be feeling. I agree totally with kalahuchi and I too am amazed that you did not get an appointment to have your condition monitored, at least for a while. My consultant told me that NICE stipulates that anti-VEGF treatment is not given until one's eyesight is worse than 20/40 or 6/12 even if wet AMD is present. But things can change very quickly as I have experienced. My eyesight dropped from 20/40 to to 20/63 in four weeks. So check your eyes with the amsler grid regularly and you can also print an eye chart from the internet so you can check your visual acuity.

As kalahuchi already said, the Macular society is very good in giving good advice. Don't beat yourself up about what might or might not be in the future. None of us know what might be waiting around the corner for us and not just regarding our eyesight. If you are really worried perhaps you could see your GP and ask to see someone for a second opinion. Try to be of good cheer - not everything turns into a disaster. I wish you all the best. Do keep in touch. We support each other, share our experiences from which we can learn so much and above all - we are there for each other. Big hug now. x

[lizjim25 in reply to Ayayay80]

Thank you so much, I feel I've made some new friends in the last few days .You have no idea how much it has lifted my spirits,my husband is amazed how upbeat I have become .You are right not everything becomes a disaster ,I have so much to be thankful for .Thank you for reminding me of that.It is onwards and upwards from now on . So glad I have found this site, it has given me such hope,Thank you friend X

[Ayayay80 in reply to lizjim25]

That's the spirit! x

[Hidden]

Hi lizjim, was going to send you a hug but looks like ayayay & kalahuchi have got you sorted! Xxx

The amsler grid is key - check each week (I mark mine so can tell if changed). You can also do it ad hoc by looking at anything with a straight edge eg door frame.

If there is ANY waviness go straight to a&e -as you have already been diagnosed with wetmd don't faff about with waiting for further optician/gp appts. I'm hugely surprised the clinic didn't put you in the system for regular reviews or tell you how to check as deterioration isn't always obvious without the grid.

As has been said, well worth you calling the Mac Soc .

Wishing you all the best going forward x

[Lizjim]

Thank you so much, I am overwhelmed by support from here . I am beginning to calm down and look on the positives. It is so reassuring to know I have people who understand what I am going through. X

[Macular_1]

Hello Lizjim,

Please give the Macular Society a call on 0300 30 30 111 (9.00am to 5.00pm Monday to Friday) if you would like a chat.

The other posters have been very supportive and helpful.

You need to continue to monitor your eyes using an 'amsler grid' and know what to do if you spot a change in your sight which may indicate that a further episode of 'wet' macular degeneration has occurred.

If you would like an amsler grid and more information; please give us a call.

Best wishes

Helpline

Macular Society

[ursaw]

I'm so sorry to hear of your diagnosis. It is quite a shock. The best person to speak to, I found, is your optician. They are more knowledgeable about the condition than most doctors. You can make an appointment with your optician any time you feel worried. You might have to pay for it, but it is worth it to keep on top of the condition, which sometimes deteriorates rapidly. They can also make an appointment for you at the eye hospital, without involving the GP, so you seen very quickly.

Best wishes

[JimGlanDwr]

As others have said speak to your GP. The eye clinic after confirming I had AMD suggested I saw my GP as soon as was convenient. I believe it's normal practise for the clinic to write to your GP so they should know already.

If it's any help I was told last June by the eye clinic, like you I was very concerned. I had an appointment at the opticians recently which included an Amsler grid. The result was my "eyes are good for someone my" age. my prescription had not changed very much in several years but I decided to change my old varifocals which I had had since 2013 and were getting a bit scratched for a new anti UV pair.

As time goes by I feel much more confident about my sight and hope you do as well.

[lizjim25 in reply to JimGlanDwr]

Thank you for your very positive comment, it gives me hope x