Macular Degeneration (just diagnosed)

[EmNetta]

Is there anything I can do to improve/slow this down please?

I never thought anyone made it up! Who'd wish that on themselves?!

I just think the optician is a bit cavalier with issuing a diagnosis and deciding that monitoring is the best course of action without seeking specialist help. I am surprised that he/ she is not passing the patient on for further tests and a diagnosis by an Ophthalmologist who specalises in Macular Degeneration.

It is a bit complicated, but am pleased we have so much more information already, particular about the Macular Society.

I noticed at the top of the page, the opticians I used recently are now involved with Mumsnet "Our all-new eyecare section", but could only find some very basic information for parents, not actually a new section.

If you get them, just work hard to relax. Its unnatural to have someone stick a needle in your eye and that's where the stress comes from. However, the more you can relax and think about something else, the more pleasant the experience.

Let's be real here - no matter how much you tell yourself to relax, the experience isn't going to be pleasant. The very idea of having a needle put into your eye is skin-crawling and anxiety-producing. But the actual experience is not nearly as bad as you fear. And var123 is correct, keeping calm and trying to relax (as opposed to tensing up) is a better way to get through the experience.

I find that the thick goo of the final numbing 'jelly' actually helps in another way - you can't 'see' clearly what the doctor is doing to you.

Best of luck anyway. And keep us posted on your progress.

I'm fairly sure I've had worse procedures, and I know someone in the Isle of Man who has eye injections here every few weeks. It's good to have so many honest opinions from Mumsnetters and at least we've been assured that no-one's refused injection either last minute or after the first one.
Let me know when you have the date, Footle, and I'll be thinking of you.

At the hospital where I work, there are trials going on into the dry type of AMD which is very positive for the patients. So far it's looking very promising but I'm not in the research department so unfortunately I can't tell you much more than that.

That's good to know, Scrambled, seems a lot of people could benefit.

Really hope you have a positive appointment Footle, and feel confident with the consultant. Have you arranged for someone to accompany you?

Hi var123 it sounds like we have had a very similiar experience. about 2 years ago i developed wet amd very rapidly and had 2 lucentis injections. I had to have another one 12 months ago. I also have dry md in my other eye. I am 44 so not something i would have ever expected and extremely stressfull.

Sorry to hear about your experiences morethan, especially unlucky for someone your age, and not surprised it was stressful. I really hope that's the end of injections for you.

I think there is a massive mental adjustment to be made following the diagnosis, but I know I haven't made it.

I was 44 too when diagnosed. My children were 8 & 10. One day it just all got to me and they found me sobbing uncontrollably in the kitchen. I was thinking that I would not be able to see them as adults, except for vague glimpses out of the corner of my eye.

Then, miraculously, the lucentis stopped the leaking! Mostly I do my best not to think about it because the idea of going blind was suffocating. I couldn't imagine coping with it, and to be honest I was so upset, I didn't really want to try.

I felt completely alone though. So, although I wish it had happened to none of us, it is sort of soothing to not feel uniquely unlucky. (I hope that doesn't read badly.)

Mine was caused by shortsightedness, or at least the same eye size and shape that causes shortsightedness. I've had glasses since I was 11. My prescription is around 4.5x. Is that the same for everyone else?

Thanks Emnetta, i hope so too.. but saw consultant last week for a regular check up and he is concerned that it looks like i have some inflammation again. Not enough to schedule an injection now but wants to see me again in 4 weeks. Var I could have written your last post... trying to carry on as normal with this huge thing constantly looming. I have a 10 year old DS and just pray I get to see the man he will grow into

I don't think I've adjusted yet, seems more of a denial at present, probably because I know so little about my eyes, not even how short-sighted I am. Learning to drive was when I knew I needed glasses, plus for theatre and tv, and it was just a nuisance, even improving when I got to 70 and no longer bothered using them at home.
As I understand this type of sight problem, it mainly concerns central vision and one can still see round the edges, enough to walk around at least, so I do hope I'm right and you will indeed be able to see your son as an adult, morethan. Thanks to a previous poster, we also know there is good news coming from the research people, so our sight just might improve with time/new treatment.
I do have someone to drive me to appointments thanks Footle, although I still enjoy the car I'm glad I have help for the bad (nauseous) days.
Hope GP will tell me more about driving restrictions.

Rather late to this but if it helps if the macular degeneration is mild and not wet most optometrists would monitor rather than refer.www.macularsociety.org/How-we-help/Eye-care-professionals/Referrals-and-pathways. This is because there is currently no treatment for dry macula changes and the hospital eye clinic in most areas would not recommend referral in this case.

However you should be given lots of advice on your condition - particularly diet and uv protection - and watching out for symptoms that could indicate a wet change which would need an urgent referral - within a week - to an ophthalmologist meaning you would need to see the optometrist immediately should they occur. Wet macular degeneration causes a sudden change in vision and lucentis injections need to be commenced straight away, hence the urgent referral. Dry changes can sometimes change into wet. If there is any indication of a possible wet sign your optometrist should refer you urgently.

If your optometrist is in any way concerned about their diagnosis or there are risk factors they should be seeking an ophthalmologists opinion. There is a scan (OCT)- already mentioned- that can be done of the layers of the macula to look exactly at where the changes are and sometimes a dye is injected to check for any leakage signs which would indicate a wet change.

You may not need these extra tests if the diagnosis is clear cut but if there is any doubt then the optometrist should refer to have them done (although some opticians now have an OCT scanner in their practice and would only refer if they were not happy with the changes they saw on the OCT and wanted an ophthalmologist's opinion). Only if your optometrist is happy with their diagnosis should they be monitoring themselves, so I would assume this was the case and they should be able to tell you exactly what they have seen and are monitoring.

You need to ring the practice and ask for the optometrist who saw you to ring you or book a recheck appointment to go through your eye condition with them . Your GP won't have access to the information from your eye test unless your optometrist has written to them so won't be able to explain your condition exactly or judge if referral is needed without this. If they are a big multiple practice they may have a senior optometrist so you could speak to the practice manager and request an appointment with the senior to go through your eye condition more thoroughly and explain exactly what they are monitoring and why referral wasn't considered necessary in your case.They should be able to show you on any photographs they took where they saw the signs of the macular degeneration. I see you've discovered the macular society who are excellent, once you've read and digested their website ring their helpline for more information as this is also very good.

Thanks, mrswolf, for all the extra information. The original eye-tester did a second series of tests (inc. the puffing-thing), then took me to a second and higher-up person with a different machine when I had some different tests and more of the puffing, nearly an hour altogether yet next-to-nothing on my records.
Getting back for another appointment would be difficult, as usual driver will be on holiday until 23rd (and is booked for GP appointment on 24th) but I could certainly phone them re info for GP.

Agreeing about night-driving Footle, and so many friends decided to stop before having any accidents. Am hoping that the elderly ("Nearly ninety you know") driver who wrote off my car this summer has now stopped driving, while feeling sorry for anyone without the car. My second helper should be more available again soon (daughter ill), it's not usually a problem to be driven, and at usual cost.

probably outing myself here but im a nurse working in amd research and also on a clinic for amd. if you have any questions im happy to try and answer them for you.

CishAndFips, May I ask 4 questions?

1. How often do you see the non-age related type of MD?
2. Have you ever known someone to be cured? or take a very long break?
3. Once the injections stop working, how long does it take to be so blind that you can't do any normal every day things like driving or reading?
4. Is lucentis available on the NHS now?