Macular Degeneration (just diagnosed)

[EmNetta]

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

not a great expert on spinach quantities beyond what I said.

Eating lots of veg doesn't definitely prevent AMD (sadly) it just reduces the risk. life ain't fair.

here's to a cure.

Collected new glasses from opticians this morning, and enquired about my Macular Degeneration, specifically if wet or dry type and whether GP had been notified. Seems only info on my notes show that Optician is "monitoring" it, with apologies from nice assistant about lack of information.

I plan to see GP in 3-6 weeks about another matter, and don't feel the MD is urgent enough to make this sooner, unless anyone thinks otherwise now?

Take the vitamin supplements suggested on this thread
Don't smoke
Keep your blood pressure in a good range
Wear sunglasses in bright sun - especially if you have light eyes
Go for regular eye check-ups / scans

I think its urgent. The optician should be referring you direct to the specialist at the hospital and they should be seeing you and injecting either lucentis or the other one that's really a cancer treatment into your eyeball with a week or two.

Do you know if it is in one or both eyes?

I'd get it checked out sooner rather than later. The sooner you begin treatment, the more that can be done to preserve your vision.

Avastin - that's the name of the other drug.

How old are you?

Yes, drugs that are used currently for injections are:

Avastin - cheapest
Lucentis
Eyelea - newest and most expensive

There are currently clinical trials underway to see if pills could replace injections.

LUTEIN - is a (fairly expensive) anti-oxidant that some say works to slow the progression (it is related to beta-carotene i.e. carrots!).

I don't know if ti works or not but versus going blind, its got to be worth a try.

But get that referral today (and change opticians going forward).

I don't even know how they diagnosed it at the back of a high street shop because the hospital has to dilate your pupils massively and use a special machine to photograph your eye and then show it to a specialist to diagnose it.

I hated the injections. They go straight through your pupil.

The clinic was fullto bulging though, and I was only one fo two who was not white haired. I think other people manage well but I detested it.

It doesn't hurt. You just have to stay very still. Clamps hold your eye open. And you feel a pressure and then a bursting through, like when you pop a balloon.

As I said I hated it, but I think it could be more tolerable if you could just treat it like a normal injection.

var123 - you speak of it in the past tense. Do you not have it done anymore?

Friend has these on an ongoing basis. Less frequent now than a few years ago as drug has changed and effect lasts longer. When she was first diagnosed the optician had her assessed at hospital asap to avoid further damage.

Injections not pleasant, but you get used to it. They dilate your eyes (for scans to monitor situation), then put you in a chair similar to the ones at the dentist. Over the course of 10 minutes or so, you are given numbing drops, iodine drops, and then a thick numbing gel on the inside of your lower lashes (consistency of petroleum jelly / vaseline).

They put a device around your eye socket (can't think what it is called) that prevents you from blinking and then inject the drugs using a fine needle. You feel it (a prick - I always flinch a bit) but not painful. The strange sensation is 'seeing' the fluid of the drug being injected. They typically inject in the white of the eye, near the iris. And then you go home and wait for your eyes to un-dilate.

I tend to think of it in the same category as giving birth - not something you look forward to, but you do it because you have to. I'm just grateful there is something that can be done. Not so long ago, there was no treatment.

Thanks to Earlybird, var123 and LIZS for all the additional information. I'm really surprised that such a large, well-known chain of opticians have omitted to mention any referrals at all, if it is indeed an urgent diagnosis.
I'm grateful for information, but the details of injections are really off-putting, and I'm not sure I could volunteer for any more invasive hospital treatments. Better start trying to make GP appointment, and make decision/s later.

Footle, I don't smoke either, my diet's always been good thanks to parents, and like you, b.p's on low side, despite being borderline overweight. Always worn polaroid sunglasses too, avoiding migraines, and it is indeed unfair.

Well, that's my appointment made with GP, three weeks today, which seems a long time, although as GP's reduced clinic times to spend more hours on admin, mustn't grumble, I suppose.
Best wishes for your appointment, Footle.

have I missed something? You've still not been told which type you have? Surely somebody must know without you have to wait 3 weeks?

If it is the wet type there IS some treatment, as others mention.

Well specialsubject, today's assistant read through my notes on the computer, and said there were no more. I'm assuming that the optometrist who did the relevant tests was away this morning, otherwise we could have asked her.
I have now had chance to check the Amsler chart with my new glasses, and can see no difference to last week, so am assuming I'll be ok.

The Macular Society have active groups in many areas.....my mum attends her local one and sings its praises. They have all sorts of contacts such as links with SAVI though whom she's received all manner of aids from magnifying devices to extra bright lamps for reading. If there's one in your area it might provide some support and will certainly have members who have a wealth of experience.
As a positive, my mum has had dry MD for over 10 years and her sight is still pretty good.

No, I am no longer being treated. I only needed it twice. I did not have the age related variety and I was lucky enough to have health insurance so I could get lucentis. Two injections were enough to stop the leaking in my macular. My type was caused by short-sightedness.

I realise that the chances it will come back are high, but the hospital has signed me off.

A routine eye test was where mine was first spotted too, but the optician could only say that there was some leaking in my macular. She could not diagnose what was actually wrong so I had an urgent referral to the macular eye clinic (NHS).

They originally though it could be stress-related (due to it being so rare in people who are under 50), but when it didn't stop, they realised it was macular degeneration. At that time, the NHS would only pay for avastin but my insurance policy covered private treatment with lucentis.

I had to go back at least a dozen times to be checked again. Each time, they put some drops in my eye to dilate my pupil enough to see properly. It meant I couldn't see properly for about six hours afterwards (so no driving myself home).

It was all very stressful. I am sorry you are going through it.