Now diagnosed with WET amd in both eyes - Macular Society

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Now diagnosed with WET amd in both eyes

boycie123 profile image
11 Replies

Have just been diagnosed with WET amd in both eyes. Anyone out there with both eyes. Where to go from here as sight is not too good.

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boycie123 profile image
boycie123
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11 Replies
andy1955 profile image
andy1955Macular Society

Hello Boycie,

So sorry to hear about your wet AMD.

I am sure others will give you support and advice on this forum, but if you would like a chat with the Macular Society helpline, please call us on 0300 30 30 111 (9.00am to 5.00pm Monday to Friday).

Best wishes

Helpline

Macular Society

180164 profile image
180164

Hi. I too have wet in both eyes plus central serous retinopathy. I was diagnosed after an excessive macular haemorrhage when I was 44 I'm 52 now. How old are you ? I have distortion bright lights affect me. Reading is a no no even with magnifiers. I suffer with a lot of headaches and no longer work .However you will adapt are you been offered treatment. I've been having photo dynamic treatment (visuldyne) for a 6 years now. Kind regards Mandy

boycie123 profile image
boycie123 in reply to 180164

Thanks for the support.

cormorin profile image
cormorin

Hi I have had wet amd in both eyes fortunately not at the same time. Have had problems with the eye that wet is in now. It is not responding to Eyelea as well as my right eye did to Lucentis.

We are told that every eye is different so maybe you will experience this with your eyes. Hopefully you will do well with both but if only one improves that will be a result as it was for me. Please do not get too down as Macular Society have many means of help. Do give them a try as they really saved my sanity.

You are not alone, you have everyone here to talk to & there will always be at least one who can maybe help a little. Talking really does help. Best of luck for your future fighting against amd, maybe soon we may have a cure.

180164 profile image
180164 in reply to cormorin

Hi there. Everyone with wet amd has lucintus or eyelea

. Wonder why I have a different treatment? ?

maryparry profile image
maryparry in reply to 180164

I started on avastin, then lucentis now eyelea. Not looking good.

boycie123 profile image
boycie123 in reply to cormorin

Thanks for the support

Hi, Boycie just wanted to send you a hug x

Diagnosis is such a shock even if we have an idea something's not quite right.

Once the initial shock wears off and the rollercoaster of emotions levels out a bit you will learn that you are stronger than you think and that there are resources to help you cope. Treatment is successful for many many people.

I dont have your actual problem but there are experiences we all share and this forum is a great help. As Cormorin has said, talking does help and you are not alone.

The macular society are fantastic and you should definitely contact them.

Best wishes.

cyprusbaby10 profile image
cyprusbaby10

my mother has been to the london eye hospital and although private they may be able to help.At least a consultation is worth considering to know what can be done.once diagnosed you could be treated elsewhere.Ask for Mr Bobby Qurashi not sure I spelt that correctly ,hope this helps paula

boycie123 profile image
boycie123 in reply to cyprusbaby10

Hi Paula thanks, have already been to London Eye hospital last year for consultation on first eye diagnosed with wet amd 4 years ago they said that the only thing they could do was the implant but not yet. I just wish there was something else other than the injections they don't seem to do me personally much good.

cyprusbaby10 profile image
cyprusbaby10

Hi Boycie my mother had the lens implant done at the London Eye hospital in both eyes .it was successful and she can now see again. It was very expensive at the time £20000 ,but at 94yrs it was best spent on her vision. The good news is they are now going to start doing this treatment on the nhs in Blackpool.The consultant is called Mr Raj at Blackpool Victoria Hospital hope this news helps you to know something can be done.

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