As my wet amd is getting worse every day i am wondering if this is normal or if i am just unlucky?

I do tend to be panicking a lot as i am on my own & the wait till my appointment on wednesday seems so far away.

As i said before i have tried to do everything right but all seems to be going wrong. Clinic did not seem to listen when my GP said he thought i had wet amd & gave me a date of 1st August.

Visit to Specsavers worked but it will be over 2 weeks from my first symptoms to my visit on wednesday. Will it be too late as i am very scared? So anyone's thoughts would help please?

We also have no Emergency Eye Clinic for AMD, just one clinic per week for our large area.

If GP had been listened to i could have started treatment at the Clinic last wednesday.

I just cannot believe that my worst fear ever is coming true.

Sorry for waffling on but i am very scared now, not of the injections but of losing my sight.

13 Replies

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  • Hello again Cormorin, Your vision is getting worse because of a build up of fluid, the lucentis injection will hopefully stop this and your eye should clear, so stop panicking, and good luck

  • Thank you so much. I havent been this scared since my son was tiny & had to go into Hospital. Even 3 hip replacements havent scared me this much.

    I guess it is being on my own with no one to talk too.

    Everything i do, my Volunteering & hobbies, revolve round my sight.

    Cant read now, typing difficult, scary where it will be by wednesday so thank you so much for your encouragement

  • Dear Cormorin

    When you go to the clinic I suggest you take a friend with you. Ask him/her to accompany you in each phase of the appointment, both for moral support and because he/she will remember better what you'll be told. If you have sunglasses, do take them with you because afterwards the bright daylight will be difficult to handle due to the drops they'll have put in your eyes. But that will pass.

    Very best wishes.

    Beldie

  • Thank you for the advice. My daughter in law has changed her day off this week so will come with me. She is very good & will remember much more of what is said than i will.

  • Hi Cormorin

    I am sorry you have been made to worry so much. Good you are being seen this week. If you'd like to chat things through our helpline will be open from Tuesday 9am (sorry about the bank holiday! Good luck.

    Comms at the Macular Society

  • Hello,

    Thanks for answering. Trying very hard to distract myself but not easy when there is only me & the Cats!!

    Tried checking online & got horror stories that Lucentis only works for a few people & that nothing much can be done.

    Horrible when our eyes are what we all rely on. Being told i will no longer be able to read was a real blow! Have 100's of books & loads waiting to be read.

    Upsetting to think i may not be able to as today reading is difficult & gets worse every day with 2 1/2+ days to go.

    So very grateful to all who have tried to reassure me. As soon as i can after Wedesday will try to let you all know how i got on.

    Many thanks to you all

    Cormorin.

  • Hello Cormorin,

    Please do call us on the Helpline today (0300 3030 111) - we are here to listen and help you as much as we can.

    Just to reassure you - many people do not receive their first injection inside two weeks, although that would be the ideal and recommended time.

    The injection of Lucentis is 93% successful - which is very high. It is also very safe.

    Please phone.

    Helpline

  • Hello Jayne

    Have been talking with your colleague who has been very helpful & given some info on our local Support Group. I had this but had not gone along when invited due to waiting for a hip operation, now done.

    I gave the info to someone a friend knew with wet amd as she seemed more in need then.

    I was given the phone number of Liz Coombs as an Injection Buddy who rang me this morning. Very nice lady & very helpful. Just hope tomorrow is positive though am looking on the negative side i know.

    Many thanks to all at Macular Society & everyone who has posted & got me to today.

    Regards

    Cormorin

  • My experience is that wet AMD gets worse all the time!

    Over the last 4 years I have had 34 injections in right eye, and 30 in left, all Lucentis, apart from one steroid jab in left eye as Lucentis didn't seem to be working. The steroid didn't work either.

    I have limited sight in left eye, grey patch and a lot of distortion, and cataracts in both eyes.

    I find the prospect of 5 weekly Lucentis in both eyes for the rest of my life hard to accept, but as I am completely alone, no family near, I have to cope.

    I wish this site had larger fonts - I have enlarged the page as much as I can with Firefox, but it means I have to scroll from side to side to read posts.

    Good luck to everyone who has AMD.

  • So sorry to hear that, i wish someone somewhere would find a cure for wet & dry amd.

    This has to be one of the worst things to happen.

    I managed to get to the Emergency Eye Clinic, cost me £40.00 in cab fares as being alone i dont have transport.

    Worth it though to be told wet amd is not 'running rampant'. Doctor was hopeful that i will be able to start Lucentis at my appointment on Wednesday & that the symptoms will stay at this level at best.

    Now typing one fingered waitinf for vision to clear a bit after drops, wonderful life if you dont weaken my Mum used to say!!!

  • Thanks for your comment, Cormorin, and I hope it all goes well on Wednesday. I hope you'll be one of the lucky ones who don't need many injections.

  • Morning Cormorin,

    I am sorry to hear you have had difficulty getting an appointment and your vision is getting worse. If you'd like to chat things through our helpline will be open from 9am (0300 3030 111) and I'm sorry to hear about your cat. Good luck.

    Sue

  • Thank you, everyone is so nice on here. Makes me feel less alone. Have a friend coming over soon but will try to ring later as that helps a lot,

    Hoping i get more information at the Clinic on Wednesday.

    So fingers crossed!!

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