Have strange disturbance in my vision, hoping someone can help. Had dry amd for 5+ years & month ago told wet in right eye. Wavy lines &

grey blur gradually got worse. Consultant unable to treat as not bad enough for NICE's criteria.

Have had to fight to get appointment week earlier though telling anyone i could that symptoms are worse. One Nurse i spoke to scoffed at me telling me 'of course you will when you blink'! This being her answer to my telling her that wavy lines & dark blur worse & that in certain lights & when i blink the dark grey spot has a bright light around it.

To her this seemed a silly thing to worry about but not to me who can find no answer to this in anything i read online.

Has anyone else experience of this or is this just me being silly? Havent had time to try to talk to Helpline yet as been dealing with very ill cat who has now passed today.

Not a good week for me all round.

Any ideas would be welcome?

24 Replies

oldestnewest
  • Hi,

    From my experience with MD in my right eye, what you describe sounds just like it. I don't want to be alarmist as we're all different but my wet MD progrssed quite quickly and the grey spot got bigger so I couldn't see anything - you are absolutely right to press for an early appointment.

    As for the the bright light round the grey spot... I know exactly what you mean. Whenever I shut my eyes I can see the spot and it has light around it... a bit like when you've looked at a light bulb then shut your eyes and you can still the outline. So you're being silly, that's exactly what I see as well.

    So stand your ground, you're absolutely right!

    Alina

  • Thank you for that, at least i can stop being terrified & settle at scared stupid.

    Will see what my Consultant says on Wednesday

  • Hi,

    I was diagnosed wet MD in one eye, I was asked to take the opticians letter direct to Moorfield Eye Clinic & I was given an appointment within one week.

    They tested & confirmed wet MD & as I was within the NHS guideline I was recommended for Lucentis injection to stop MD deteriorating further.

    I suggest that you should insist on seeiing the eye consultant instead of the nurse plus push for an urgent appointment. Explain that your eye condition is deteriorating on daily basis & that it cannot be reversed hence days matter to you, after all it is your vision that is going.

    You are doing everything right but push for an urgent appoint.

    Surjeet Saddal

  • Hello Cormoron,

    I have wet AMD in my right eye and have similar experiences to you with regard to what I see and can't see. On my first visit, I found it very difficult to explain my difficulties to the consultant, who said I had 'mild' macular degeneration. I wasn't able to get an appointment for many months after that, although I knew my eye was getting worse all the time. I did not have the confidence to do what I should have done, which was to ring the Emergency Eye Department of the hospital. I was so afraid of wasting precious NHS time, just in case it turned out that I was wrong to worry.

    It is very important indeed that you seek help as soon as possible.

    I have found it extremely difficult to talk to anyone at the hospital about my visual experiences. There is no opportunity to do so at appointments and it seems that they do not consider it necessary. They seem to work on the facts they have from the results of examinations and scans. I feel it would be so much more supportive of patients if they asked us to describe our experiences. If we were listened to sympathetically and given explanations of some of these, it would go a long way towards helping us come to terms with the disease emotionally as well as physically.

    I do hope things go well for you and that you get the treatment you need soon.

    So sorry about your cat.

    muddlepud

  • Thank you for your thoughts for my cat, he was old & a Rescue cat not having a good start. Think that must have added to the stress with my eye.

    I get the same response as you when asking questions at the Clinic. No - one has time to answer the questions we feel are important. Which is why i am so glad i found this site. The expensive trip to the Emergency clinic did stop some fear but not much as the Doctor admitted she was only there to do tests & pass on if deemed bad enough. Also we are encouraged to take someone with us but cannot get Hospital transport for them unless we are severely disabled. So Wednesday will cost me another £40.00 to have a friend with me.

    Have to win the Lottery ha ha , got to do it first!

  • At least you know you gave your cat a comfortable and safe home for the last part of his life. I'm sure he loved you for that.

    It is unthinkable that you should have to pay so much every time you have an appointment, in order to have the much needed support of a friend. There should be somewhere you could go to for financial help; but I don't know of anywhere.

    Best wishes for Wednesday. I will look forward to hearing how you get on.

    Muddlepud

  • Many thanks for your thoughts, i will be back to tell you how i got on wednesday on thursday.

    Thanx again

  • Hello again, nearly 12.30 in the morning & cant sleep. After waiting for ages at the Clinic due to an emergency making them nearly 2 hours behind, saw the Consultant who said i now meet the NICE criteria & he could start the Lucentis treatment.

    The injection, though unpleasant, wasnt as bad as i expected. It is the after effects that i do not like too much. I am hoping that i will eventually get some sleep but the blurry vision is off putting. I know this is expected but some reports say it only lasts a couple of hours. This has now been about 5+ hours & at this time of night there is no-one to ask how long their experience was.

    i would guess i am not the only one who being alone at night finds that everything is magnified & seems a thousand times worse as there is no-one to talk to.

    I used to resort to reading at times like this but that is a bit difficult right now.

    So sitting here making lots of mistakes hoping to feel tired enough soon to give in & go back to bed. Hopefully will be a little better in the morning.

    Doesnt help that i now have a lot of tiny black spots flashing about. Started this morning & seem worse since the injection.

    Reading this back i sound a very sad & stupid person dont i?

    If anyone has managed to read to the end of this without screaming Thank You!

    Going back to bed & leaving the light on this time!!

  • Hello Cormorin,

    I am not in bed yet, either, as I have been sending emails.

    It must be so difficult for you, living alone at this time. Support is the one thing you need.

    I have had six injections so far and I can't now remember whether I had blurry vision with the first one. I certainly saw the black spots but as I had been warned by other patients that this would happen, I didn't worry. One woman described it as seeing a fly buzzing around but to my mind it looks like two buttons hanging on invisible threads that keep bobbing about. They took about 24 hours to disappear, in my case. I was also warned that I might see a spider that isn't there - and I did one time. After another injection I saw what looked like a lot of broken up letters [could have been legs of spiders]! But none of it was real. I was glad I knew about this before I went home, even though my husband was with me.

    I do hope you get some sleep now. It is obvious that your nerves are on edge and you need to relax. One way that I do this is to count backwards from 100. Because the numbers are not in the usual order, you have to concentrate to get it right and that helps to take your mind off things. If you can't do it at first, do keep trying as it can be very effective. The first time I did it, I fell asleep before reaching one. At one time I was still awake afterwards so I started again at 200 and that did the trick.

    Wishing you well,

    Muddlepud

  • Thanks so much for being there. It is a big help just to know that someone else out there is going through a similar thing. The leaflet i was given said sight can be blurry just doesnt say how long for.

    It seems to clear a little then blurs again. Just got to see how it goes i guess. I'm probably just being a big baby, there must be hundreds of others who are a lot worse off than i am. At least after much fighting for it i am getting treatment so musnt complain too much.

    After all, the Staff at the Clinic where running very late after the emergency & still managed to keep smiling & trying to reassure us all that we would not be waiting too long. Cant fault them or the Consultant who has to start operating very early this morning yet still smiled & cracked jokes.

    Again many thanks & hopefully Goodnight.

  • Hello Cormorin,

    I don't think you are a big baby at all. It is natural to feel as you do. I myself have shed a few tears since diagnosis.

    I think you are very brave to battle on your own and you are coping well, even though you don't think so. Reaching out to others was the right thing to do.

    Best wishes

  • Hi again Muddlepud,

    It is good to know that i am not the only one to have a little weep. At first i felt like my whole world was tumbling around my ears, not knowing just how bad my sight would get before treatment.

    Now there is a little light at the end of the tunnel & it isnt a train, it is a little bit of help & hope now that treatment has started.

    My eye is now a little sore just in the corner so knowing what will happen next time i will not be so scared.

    Knowing that there is someone like yourself willing to try to help someone who is scared makes it more bearable too.

    For that a big 'Thank You'!!

  • Hello Cormorin,

    It is good to hear you being so much more positive now. I do hope that the treatment works for you. But whatever happens, I'm sure you will be able to cope with it.

    I don't think Wet Macular Degeneration is an easy condition to cope with, emotionally, do you?. There is so much that happens which seemingly can't be explained to us. Also, there is the worry of what comes next: the time limit with regard to deterioration is unknown because it is different for everyone and there is always the worry of if/when the other eye will be affected.

    I'm sure you will reach out to other new sufferers in the future, as others have responded to you. We have to help each other, don't we?

    Best wishes, Muddlepud

  • Hi Muddlepud,

    I think that starting the treatment at last has given me a more positive feeling.

    There is still the uncertainty of not knowing if it will work & if it does for how long but i feel it is a step forward after a fight to get this far.

    Some days are better than others & i guess you will feel that way too. The constant looking for signs of change is something i am trying to stop myself from doing though do think the dark spot is marginally lighter or i am just hoping it is.

    It is silly things like wearing eye make up (shadow & mascara) again, doesnt make me look any better just makes me feel better. Not sure how long to wait after the injection. Trying to keep shampoo out of the injected eye is hard for me too, mainly as i am clumsy but where there is a will there is a way!

    Hopefully i will be able in the future to help others who are scared at the start of their amd as i was as you have helped me.

    As you say we do have to help each other in this!

    Regards, Cormorin.

  • Hello Cormorin,

    You are right that I do feel like you: up and down at times. However, after 18 months I think I now have a more accepting turn of mind. I am taking it as it comes. I am 78 years old and have had no improvement in my condition; rather the reverse. I am now thinking along lines of what I will do when I can no longer read [if that ever comes about]. I shall listen to the radio and tapes. Pity there aren't so many talking books available - and that they are so dear to buy. Still some time yet to go, I believe. It may never happen.

    As for you being clumsy, why do you think I called myself MUDDLEpud? I do the silliest things sometimes!

    Best wishes, Muddlepud.

    p.s. Although your eye is feeling better, I think you should be careful not to get anything into it as I believe it takes longer than a week to heal. This isn't what I've been told but I think it is sensible to be cautious, don't you?

  • Hello Cormorin,

    Just another P.S.

    I don't want you to worry about the result of your injections because of what I have told you about mine.

    My consultant told me that 80% of those who have injections experience good results. Either the bleeding is stopped and some sight is regained or at least the bleeding is stopped so the degeneration will be much slower. He told me I was one of the 20% for whom the injections don't work. I can live with that, now.

    So you do have an excellent chance of being one of the 80%.

    Good luck, Muddlepud

  • Hi Muddlepud,

    No worries i listen to what everyone says but dont make up my mind that is how i am going to be. My Consultant said we are all similar but slightly different so while it helps to compare notes he says nothing is 'written in stone'.

    Right now my eye doesnt feel too bad but earlier it was rather painful again & felt gritty. Bathing it helped tho.

    In a good light the dark grey patch seems a little lighter so i am keeping my fingers crossed more treatment may improve it a little more.

    My biggest problem is i have to concentrate harder to read which is very frustrating as i used to get through 2 - 3 books a week.

    Cant believe how bad my vision has got in 6 weeks.

    Talking of reading, i was told that RNIB have a good selection of equipment for reading / listening to books that doesnt cost a huge amount. It may be worth checking what they have. I will once i know how my injections are going to work, or not!

    Keep in touch, please?

    Regards, Cormorin.

  • Hello Cormorin,

    I will keep in touch, of course, but I hope others will still want to 'talk' to you too.

    Your Consultant is right in what he says, of course, and you will do well with your way of thinking.

    You certainly used to read a lot! I love reading too and use a Kindle, mostly, because I can make the print larger. I can now read books, too,though because I have glasses with the bad eye blocked off and the other one magnified. I am hoping to keep my good eye so as to be able to continue in this way.

    I will bear the RNIB in mind if I find I can't read anymore, thanks. If you use them first, I would like to hear how you get on, please.

    Best wishes, Muddlepud

  • Hi Muddlepud,

    Had a bad couple of days. Had nasty ache around my eye socket so rang the Clinic for advice & got told to go to see them this afternoon.

    Although all i wanted was advice they insisted.

    The Doctor could find nothing wrong just said it is a reaction to the injection & that different people get different symptoms.

    So though feeling that i had wasted everyone's time at least i know it is just another side effect to add to the list.

    Hate the fact that the drops seem to take a really long time to wear off. Been 5 hours now & my poor 'dodgy' eye is still struggling to see.

    Oh well another day tomorrow & maybe the ache will go once the Lucentis has worn out in a day or two.

    Regards, Cormorin.

  • Hi

    Cormorin is quite correct there are a wealth of talking books avaliable nowadays, from RNIB, Calibre or your local library.

    You both are clearly happy using computers and it is also really easy to download audio books from the internet to listen to on your computer or portable player.

    Good luck with all your treatments.

    Best wishes

  • Hi,

    Going to keep on using my computer for as long as i can as when you are on your own i think you feel less 'alone'!

    Thanks for your comments,

    Cormorin.

  • Hello Cormorin,

    Sorry to hear about your eye hurting. But you did the right thing to ring the clinic. It is encouraging to me too, that you had such a supportive reaction from the staff. It is always a worry whether to bother them or not with what might be nothing, isn't it?

    I get pain in my eye, too, for some time after the injection. It is only now and again, though, and I assume it is because the eye needs to recover from the wound made by the injection.

    I haven't had trouble with seeing after putting the drops in, though. As they say, we are all different, aren't we? I am used to putting drops in because I also have Glaucoma and have to use them twice a day.

    To 'lowvision', Thank you for your useful advice. I hope to explore these possibilities one day. I'm always saying I will pop into my local library and see what they have to offer. I know that the Kindle can't download from the Public Library, though, which is a pity. I was a nearly life-long user of the Library until a few years ago.

    It is good to know that there are people monitoring the forum for any help they can give.

    Best wishes to you and Cormorin.

  • Hi Muddlepud,

    Thought i would just see how you are doing now?

    Have had a good few days since the last hiccup & the bright flashing lights have almost disappeared. The dark spot even seems a little lighter in a good light so thankfully does not seem to be getting worse.

    Now hoping that i am one of the lucky ones that Lucentis works for.

    Supposed to have an appointment for next Wednesday sent to me by now & when i rang was told my Consultants Secretary is off sick.

    Will have to ring tomorrow if still nothing as do not want to risk getting worse again.

    That thought is scary.

    Hope you are still managing okay.

    Regards,

    Cormorin

  • Hello Cormorin

    Nice to hear from you again. I hope you received your appointment and have now attended the clinic. Hopefully, too, everything has gone well for you.

    I have just been reading a report of a survey made of patients who have had eye injections. It was very interesting although, unfortunately, I can't remember where I picked it up from! I think I was following leads when I was on the Macular Society site. Anyway, it is clear from what was written that there is a really good chance that most of those who haveLucentis injections will benefit from them. All good news to you, isn't it!

    I am now going to have my third set of injections, starting tomorrow, despite not having any improvements from the last two three-monthly sessions. I think this is a last-ditch resort by the consultant but I don't think it will work. I am all right about that, though. So long as I keep my one good eye!

    Apart from that, I feel fine.

    Hoping to hear from you as to how you feel after your next injection.

    Best wishes,

    Muddlepud

You may also like...