I've only just had my diagnosis & I'm scared of what I can expect.
I was referred to see an eye specialist by my optition because they saw a cateract in my left eye. So I went along thinking its nothing these days. Next thing I know the nurse told me to return to the clinic later that day because she wanted me to see the consultant. So that's what I did. After he'd almost blinded with various bright lights (which I've always had issues with) he told me yes I do have a cateract on my left eye, plus there's one starting on my right eye. Then he said but you appear to have macular degeneration in my left eye & he arranged my follow up there & then. I see him on June 28th.
I'm only 49 & this will just add to my other disabilities. I'm planning to return to Tokyo next year for what is meant to my 50th birthday/late (8 years late) honeymoon & now I'm terrified that I won't be able to enjoy it.
I guess all I really want to know is what can I expect regards symptoms, treatments, tips on how to cope etc.
Thank you for taking the time to read this.
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fugazi1967
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know exactly where you are right now, the same thing happen to me.had cataract surgery which was successful, in 2013' have myopic macular degeneration which was diagnosed back in 2004, this seems to be progressing very slowly, thank goodness, though now my left eye is the good one for driving. I also have dome shaped macular which I was put on spironolactone to hopefully get rid of the build up of fluid behind the retina. I found that though at first I was frightened, I found that the best way to cope was not to think about it and get on and enjoy life and to do things now. The cataract surgery was done at the Moorfields and I did not wait the usual NHS time, as it was done privately and was told that you do not have to wait for the cataracts to " be ready" .I wish you all the best with treatment and your holidays.
Thanks for your reply. Now that I know I'm having treatments I feel better. I'm also beginning to adjust and feel less giddy and sick. My first injection is in 2 days time. I shall be relieved as the shape of the blind spot changes every day.
The diagnosis of macular degeneration can be very frightening but please be assured that there is lots of help and support available.
The first thing to find out is what sort of MD you have. If it is the less common wet sort, which is currently treatable for most people, I think you would have been referred more quickly as it can develop rapidly and treatment is best done asap.
You may have what is called a 'juvenile dystrophy' which is what macular degeneration is called if it occurs in younger people. MD is usually age related (and then called Age Related Macular Degeneration or AMD). However, you are just on the cusp of what the medics call the older sort - although I don't consider 50 to be old!!
There is a wealth of information on the Macular Society website macularsociety.org so do have a look asap.
One thing you might like to do on Tuesday (next time the office is open) is to ring the free helpline that the Society runs. 0300 3030111. They are really helpful and friendly and can answer your queries and talk over the possible ways forward.
There are also some measures you can take to try to help the condition from deteriorating such as anti glare and UV protection, diet and avoiding tobacco smoke. Loads of leaflets are downloadable from the website. There is also a counselling service if you need it and also a network of other people with similar conditions to talk to as well as local support groups, although these usually meet during the day as most people who are affected are of retirement age. There are also working age support groups and Skype groups as well I believe.
There is also a huge amount of 'assistive technology' for people whose sight has worsened. But let's not go there yet! You may have the treatable sort or the condition may deteriorate slowly and you will have time to prepare.
But please don't feel alone. There are thousands of people in this country alone who have the condition and cope with it very well.
I have definitely got wet AMD. Optician's receptionist didn't take me seriously, and I had to wait for appointment. Adenbrookes ocular clinic was so overstretched that I had to wait for my first injection, which is the day after tomorrow. I am relieved to have it sorted at last because the shape of the blind spot changes daily.
Thanks for the recommendation to join the macular society, I have just done this.
Hello please do not despair as there are so many ways to get help. Your Consultant & his team will be able to give you help & advice but I found the best help I got was from Macular Society.
They arranged for a Counsellor to ring me at an arranged time to talk to about how I felt & she let me ramble on as I was very scared.
Eventually I managed to calm down enough to deal with the situation. I had had dryAMD for many years & had been dealing with it but was very scared when told that I had developed wet AMD.
Mac Soc saved my sanity so give them a try please? Take care & look after yourself, sending a big hug.
thanks for that. I have just joined the macular society
Hi, what a shock for you. Sending another hug -you cannot have too many x As the other posts say, the Mac Society are brilliant you should definitely call them. It does sound like you have the slow acting form but if I were you I would ring your consultant and ask which you have, that way when you speak to the Mac Society you will definitely get the right info. It's all a bit of a blur when you first get diagnosed so your Dr won't mind you checking x
Have a good cry, release some of the tension. Take one day at a time , try not to worry about the unknown but take all the positive steps you can. This forum is always here for you X you are not alone x Best wishes.
thanks so much for your sympathy and care. I has been a grim few days, but I am now feeling a lot better knowing that my first injection is the day after tomorrow.
I fully endorse what the other posters have advised you.
Please contact the Macular Society, either by phone, 0300 30 30 111 9.00am to 5.00pm Monday to Friday or email help@macularsociety.org
I think that you would benefit from our telephone counselling service, please have a look at our leaflet 'The Emotional Impact of Sight Loss' at the following link;
I have just signed up to the macular society. My computer crashed just after I had paid so I am not sure whether its gone through! I'll look into this. Thanks for your reply
If you need to check if your membership went through, I suggest you leave it 24 hours and then check with the Customer Liaison Team at the Macular Society, tel 01264 350551 or email info@macularsociety.org
There is a lot of information about wet and dry macular degeneration, but not much at all about Myopic Macular degeneration as this occurs in people with very high degrees of short sightedness, and as far as I have been told involves the macular being overstretched and thin. in the 12 years since my diagnosis, no one has come up with any treatment, just the reassurances that my vision is getting worse.
I agree with the other posts. I had wet MD in my right eye at the age of 45...I had three injections that stopped the bleed and restored my vision. In older patients that's not the norm but I was told that my age worked for me. So you're doing the right things, the Macular Society were brilliant giving help and advice when I felt scared and vulnerable.
So sorry to hear this. My best friend lost her vision to AMD. She's a psychologist and she wanted to have something productive to do while she was working on coming up with her 'new normal' which included going back to work. She started writing journal pages which I've been editing and publishing as part of a website/blog. She's been using a cognitive therapy that she's taught to help herself and she writes with honestly and humor about how that is going. I've been doing research on all aspects of the disease and sharing it with regular blog posts.
We now have a Facebook group to go with the website. I've found over 100 Facebook groups/pages related to vision loss, low vision and blindness and I'm sharing those with the group. We also are able to post what's on our minds and hearts and discuss those things with others.
I think you would find the website/blog/Facebook group would be of help and comfor to you.
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