newly diagnosed

[orelia]

After an eye test today i was told that i have wet mascular degeneration,i am waiting for referral to eye clinic what tests will i have. I am still in a bit of a daze and worried about the future.

[Beldie]

Hello Orelia

It's just a couple of years since my diagnosis and, as I remember, there were some thorough examinations of the eyes and special photos taken with the minimum of discomfort, so please don't worry too much. The eye specialist will then talk you through the treatments available in your area. One possibility is a series of injections which may help, as it did in my case (the one affected eye being stable for the moment) but new research is ongoing and each case is unique. I can fully understand your worry and suggest you ask as many questions as you like at the clinic, talk to other people with the condition and find out as much as you can (knowledge is power!). It was great that you've already started asking on this forum; the Macular Society will help a lot. There are a lot of us out there so please don't feel isolated.

I wish you all the best at the eye clinic.

Moyra

[orelia in reply to Beldie]

Hi Moyra

Thank you for taking the trouble to reply,you have reassured me.Do the injections hurt,i cant imagine a needle in my eye!It is good to know that it doesnt always mean my life will come to a stop eg work,driving etc at least i hope so Can you do most of the things you did before

Many Thanks once again.

[Beldie]

Hi Orelia

Yes, I can do most of the things I did before. I've been lucky, I think, because so far only one eye is affected and the injections I had (four of them - one a month) stopped things getting worse and even caused a slight improvement. A local charity (Sight Action) came to my home and advised on lighting, which is important for you (see the Macular Society leaflets). I also joined a local visually-impaired group, though in fact I'm not THAT impaired! The worry one faces is never knowing whether the condition might worsen, affect both eyes, and so on; there is no way of knowing this, so it is something to come to terms with, by positive thinking in my case. But then I'm over 80 so it's maybe easier to have that attitude at my age. You don't say your own age or whether it's one or two eyes that are affected. You ask about the injections; I've spoken to quite a few others at the clinic and found that lots of people feel no pain, but others do, momentarily. You will be given anaesthetic drops in advance. It's a daunting prospect, I know, but I simply didn't dwell on it till the very last minute and practised changing my thinking and focussed on the fact that the injection would take only a moment or two. You'll be given drops to put in for a few days after each injection. Do take a friend with you for support.

Meantime, please let me know if there's anything else I can help with.

Kind regards

Moyra

[orelia in reply to Beldie]

Hi Moyra

I am 63 fit and healthy(well up to now)i work and drive.I have the condition in one eye,

it is not long since my last eye test and nothing showed up then it seems to have happened so fast,although i have been having distorted vision and thought it was my new glasses.

I still have to work and drive so i am like you worrying if it will eventually affect both eyes,but there is nothing i can do about so i will try to have your upbeat slant on it.I am so pleased thay you have had a good outcome from the injections

Thank you very much for your support

Orelia

[rainfall]

Hello Orelia,,

I was also given the news some 7 years ago,that I had wet macular,and can share all the same thoughts and feeling that you are now going through,and yes I found it scary,and had

no idea about this condition. I had some tests done at the hospital,one included a dye, which was an injection in the arm,so they could see more,and have to tell you that it was all done

with no pain to myself,and the doctor explained everything to me,so I can only hope to reassure you that further test will be comfortable. Now there seems to be so much more

treatment available for this condition,and with stem cell research in the foreground,the future

is looking good,do hope this helps you. I am a member of Macular Society,and found them to be very helpful,and also to know that many people are going through the same situation

All best wishes.

[orelia in reply to rainfall]

Hi

Thank you so much for your reply i am so touched to have this contact with people who understand the worry the condition causes.

What treatment did you have and did it have any benefits,and can you do most things that you did before.

Many thanks for your reply

Orelia

[rainfall]

Hello,

I did not have any treatment because the damage was too far gone,however I have been

able to get on with all the normal things we do in everyday life,reading gardening,etc,I have to be more careful with the sun being low in the wintertime by wearing dark glasses,so really

I give it very little thought. and remember a good deal of research has been done in this

area since I was told,so there maybe some kind of treatment to offer you,try not to worry

yourself to much, I do know how you feel,I felt very alone at the time,but then I didnt know

like you at the moment,anything able this condition.

All best wishes

[AlinaL]

Hi Orelia

I'm 46 yrs old and was diagnosed last year with Wet MD in one eye... like you I was very worried about what this might mean long term.

If MD affects only 1 eye then DVLA don't need to be notified and you can continue to drive... but as always you have to make sure you're safe to do so - that's the same whether you've got MD or any other medical condition that might affect your driving.

I felt very queasy when I was told that the only treatment for wet MD is an injection into the eye... I was ready to chicken out BUT I spoke with my optician who told me I'd be daft not to have them.

So on the day of my first visit to the specialist in Warwick, I had dye injected into my system so they could see the blood flow round my eyes, I had the usual eye test infront of the chart and an OCT Scan. I had to wait about 3 hours to see the consultant - enough time to freak myself out and then calm myself back down. I then had my first injection. With the anesthetic I didn't feel a thing... that was the same for all 3 injections I had.

The thought of the injections is much worse than the reality.

As for the outcome... the injections are a treatment not a cure and only a certain % of people see an improvement in their vision. Everyday I count my blessings as 3 injections stopped my bleed and my condition is stable. I asked the specialist if the bleed could start again and was told that as it's healed I'm unlikely to get a bleed in the same place amd there's no way to predict if it will start again elsewhere. So I try not to dwell on it.

I also count my blessings because I am one of the lucky % that have an improvement in my sight. I was legally blind in that eye before the first injection - I couldn't read ANY of the chart and struggled even when they brought the chart closer to me. After the first injection I could read some of the chart and every injection imptoved my vision. I know how unusal it is but my prescription is EXACTLY the same as it was before I had the MD. My optician was amazed and so was I. I still have distortion in my eye because of the scarring but I can see as well as before.

I found the Macular Society helpline was useful to get information and used this message board to 'talk' with others. I found that invaluable.

Say positive and keep us updated

[orelia]

Hi Alinal

Thank you for your email,i can honestly say that joining this site has made me feel hopefull,.It is so reassuring to read positive outcomes,i am delighted that it went well for you ,all i can do is that it does the same for me.

Did you wait long for your appointment,i only went to the opticians on Friday and she sent a referral to the hospital,do you have regular appointments at the eye clinic.I am sorry to ask so many questions but i like to be prepared.

Many thanks for your support i will keep you updated.

[andy1955 Macular Society]

Hi Orelia,

Sorry to jump in here, but if you have been told by an optician that he/she suspects or even knows you have wet macular, ideally you should have an appointment at an eye hospital macular clinic within 7 days for more tests. If wet macular is confirmed, treatment should then commence within a further 7 days. These are the guidelines issued by the Royal College of Ophthalmology.

Treatments rarely restore any lost vision, although about 30% of people report an improvement after their first injection of lucentis. The treatment is primarily designed to stop deterioration in your sight.

How is your referral being made? Hopefully not via your GP as this will slow things down. You should have been 'fast tracked' by your optician directly to the hospital.

Please call the macular society helpline on 0300 30 30 111 (9.00am to 5.00pm Monday to Friday) if you want more advice or are experiencing delays.

[orelia in reply to andy1955]

Hi Andy

The optician sent a referral while i was still there,rang hospital today who said they hadn't received it so rang optician and they said they had rang the hospital to confirm they had it,rang hospital again waited ages then was told i would be seen within 2 weeks.

So i will just have to wait and see what happens.I do think i have left it too late as i have experienced problems for the last few months but thought it was caused by me new glasses. So i suppose i only have myself to blame for not getting symptoms checked much earlier. Thanks for your advice very much appreciated

[AlinaL]

Hi Orelia,

As Andy said, make sure you're seen as quickly as possible. The sooner you get treatment - if treatment is appropriate the better. Just remember to try amd stay calm... easier said than done I know

In my case:

05.12.2011 I realised I had a problem with my vision

31.12.2011 Went to the optician to have it checked out. They gave me an OCT scan and told me that I had a bleed.

Sometime mid-january: The NHS took their time with an appointment so I used a private healthcare provider through my employer to get a quicker diagnosis

06.2.2012 - Diagnosed with Wet MD. Had to go back to my GP to get a referral for NHS treatment as I was quoted somthing like £600 for an Avastin injection and £1100 for Lucentis and given that you have the injections every 4,6 or 8 weeks I couldn't afford to fund this long term

29.02.2012 - 1st Injection of Avastin followed by another 2 injections 4 weeks apart.

Check ups every 6 weeks after that and as it's stable that moved to 8 weeks.

My situation was complicated as my optician is not in the same location as my main home so they couldn't do a referral to the hospital - so you're appointment should be faster than mine was. So stick with the NHS, as the treatment is costly and you don't know how many injections you might need. One of my friends has have 14 injections so far and the bleed hasn't stopped and her eye is deteriorating.

We're all different, so stay positive. Write all the questions down so you don't forget to ask them when you see the consultant. Plan for the worst but hope for the best. Many people cope with MD and are able to function so it's not the end of the world - even though it's quite devastating to get the diagnosis.

Hope that helps

All the best

Alina

[orelia in reply to AlinaL]

Hi Alina

Well some good news i dont have Macular degeneration i have a small hole in the macular and a small cataract,i am having the cataract removed and a procedure to close the hole if needed, because the hole might repair itself. I do feel a lot better knowing this.

Many thanks for your support it helped me a lot

Orelia

[Annie69 in reply to AlinaL]

Hello Alina.

You had an bad first experience. I am a new sufferer, dry macular degeneration in one eye. The speed was so fast it was in itself enough to worry me. I was sitting in the consultant's office at the West of England Eye Hospital on the 7th day after seeing the optician, who had told me if I had any strange sight changes before the appointment date that I must go to the hospital immediately and just walk in. If I remember correctly, the form she gave to the clerk at the opticians said 'Do not refer to GP'.

My question would be what is meant when we are told 'it can take a long time to deteriorate'? 3 months? 30 years?

[AlinaL]

Hi Orelia,

That's great news... you must be relieved. After my close shave with MD I count my blessings everyday that it's so far worked out so well for me.

Glad I could be of help. Let me know how the cataract removal goes.

Best wishes

Alina

[gunning96]

Please try not to worry. I was diagnosed 5 years ago with Wet Macular and since then have had twenty five injections in each of my eyes. The injections are not as bad as they sound and they have saved my sight. I have the utmost faith in my Consultant and the drug Lucentis and very soon I believe there will be a complete cure for the condition. My eyesight has held over the past five years thanks to the treatment I have received.

[blink1822]

Hi all,

Just wondering-- are any of you taking eye supplements? My grandfather takes a daily supplement with lutein, zeaxanthin as well as meso-zeaxanthin. He's never had an injection and says he's doing well.

What's your take on AMD vitamins?

[isherwoodjon]

At 67 my optician spotted the AMD symptoms, thankfully.

The eye department soon gave me a series of injections which are as described above. The staff know exactly your anxiety. They were wonderful, all the department. My first injection was done before I knew, believe it or not . After the short course I was discharged as though nothing had happened. But I owe my driving and continued good sight to them all.

Good luck. Hope you're as fortunate as myself. Speed of diagnosis and treatment is vital. You're off on the right course.