I have just been diagnosed with macular de... - Macular Society
I have just been diagnosed with macular degeneration im only 47 I thought it was aged related can anyone help me please.
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thank you janny67 I have the dry form and its only in my left eye, I was told to eat plenty of fresh fruit and dark green veg. I have been given stronger lens reading glasses and to do the Amstrel grid every month for any changes and I had to order the supplements, I was told to get called Macushield. I was worried when I was first told but I have realised that if I eat healthily and take these viitamins hopefully it will slow the process down
Hello. I am 39 and have been diagnosed with wet amd in my left eye so am starting the injections. I am still in shock really as I thought if I was unfortunate enough to get this or 'dry' it would be in at least 10 or 15 years time. Diagnosis was last week. I am scared to death by it all. Its horrible. I really am.Keep worrying that the treatment might not work.Or that it will happen in the other eye too. Then there is all the risks treatment involves. I can't stand the thought of being a burden upon all the people I love/care about(including my partner, she deserves better than having to look after me twenty years too early).
Anyway, I agree with you it should not always be referred to as Age Related. I wish you well with everything.
Hello, if you feel able to, you are welcome to ring the Macular Society helpline on 0300 3030 111 and discuss it with us. We will try and be of help. We are open 9am - 5pm Monday to Friday.
We also advise that you obtain a referred to a retinal specialist if you haven't already seen one.
With regards.
hi, thank you my opticians never referred me to any specialist just told me to do the Amstrel Grid once a month for any changes, eat dark green veg and to see him in a years time, unless I notice any changes
i went to see the GP told me i dont need to be referred to the specialist as its in the early stages so i will just have to keep checking my eyes on the amstrel grid and go back to the opticians when i notice any changes
Hello,
Please ring us if you would like us to send you out some information on nutrition and protecting your eyes. You may find these of some help. Alternately, you can look at information about this on the Macular Society website: macularsociety.org
Since you are so young, it may be worth while requesting a referral to a retinal specialist via your GP. You can then explore things in a bit more depth with them.
With best wishes.
Hi, I was 46 years old when I started getting wet amd. I have a condition called pseudoxanthoma elasticum (PXE). Do you have wet amd or dry amd? If it's wet amd have they checked for other PXE signs/symptoms? It's often not diagnosed until you get eye problems. Take care Jim
Hi Homemum,
If you would like to talk to someone about your concerns, we have a confidential telephone counselling service here at the Macular Society. If you would like to take advantage of this, please call our helpline - 0300 30 30 111 (9.00am to 5.00pm Monday to Friday). They will take a few details from you and arrange for one of our professional counsellors to call you. All of our counsellors have sight problems themselves and fully understand your anxiety.
Best wishes
Hi Homemum
I am also 47 and was diagnosed yesterday with dry macular, this was at the eye clinic after a referral from the optician. I was asked if I had questions but was far too stunned at the time to ask them all, given very little information. Didnt have a great day today either, when I couldn't see my shopping list, seems to have come on so fast.
Hi I have had dry AMD since I was about 27 years and although it is worrying I hope that in time a cure will be found I have it in both eyes. Incidentally, I have never smoked so I guess mine is some sort of hereditary form of the condition bit I am 47 now
Hi Porsche,
If you have had a macular condition for 27 year; since you were 20, it will not be AMD; you have but a macular dystrophy. Has anyone every told you what your condition is? You would need to see a specialist macular consultant who is familiar with genetic macular dystrophies to obtain an accurate diagnosis. Not all retinal consultant ophthalmologists are able to do this. It is important that you know what your condition is, because as you mention there is every chance that a cure will be found for certain conditions in the coming years. If you would like a chat about your circumstances, please call the Macular Society Helpline on 0300 30 30 111 (9.00am to 5.00pm Monday to Friday).
Best wishes
Helpline
Macular Society
I was diagnosed with macular degeneration when I was 15. After reading this reply I am wondering about this diagnosis. I have been to several opthamologists and have also been told "it's like macular degeneration but it shouldn't get much worse so it's called macular dystrophy: A year and a hallf ago I saw a new eye specialist and he said there was no such thing as ,acular dystrophy.? I am now 46 and have struggle with this for over 30 years. Any suggestions or reccomendations would be appreciated.
Hi.
I was diagnosed at 40, five years ago. The doctor would not even admit what he was seeing....had to note his body language and went home to make the diagnosis myself online. I'm now 45 and starting to suffer. What happens when night driving becomes scary? I just can't afford a doctor, as am grad student. I'm such a huge outdoor's woman...I am scared. Do I apply for Soc. Sec? In the last 3 months it has affected my ability to work---find dining...a great income supplement for a student... I'm scared.
Hi Natalie,
If you were diagnosed with a macular condition at age 40, you should have been given the name of your condition. If you haven't, you should ask your GP to make a referral to a consultant ophthalmologist who has experience of macular dystrophies.
Are you diabetic or myopic (severely short sighted)? This can sometimes be the cause.
I strongly recommend that you call the Helpline of the Macular Society on 0300 30 30 111 to have a chat about your circumstances. They will be able to give you some good advice and information and can give you advice on a suitable consultant that your GP can refer you to.
Best wishes
Helpline
Macular Society
Hi andy - thank you for your reply. I have had the condition since I was about 27 and I have been diagnosed as having Dry AMD by a Consultant Ophthalmologist but I did not know there was a specialist who dealt with macular dystrophies that is most helpful and I will see if there are any in Northern Ireland.
FIRSTLY THERE IS LIGHT AT THE END OF THE TUNNEL,i have AMD but butterfly macular dystrophy.This condition shares all the signs of AMD difference is it move's causing waves in the central vision. It can take 20 years after diagnoses to show signs of blindness..I MYSELF TOOK THE DECISION TO KEEP EATING ANYTHING RED ORANGE AS IT CONTAINS SOME THING CALLED LUTUIN WHICH REPAIRS THE MACULAR, NOW 54 YEARS REGISTERED BLIND AND HAVE A GUIDE DOG , NO CHANGE IN 10 YEARS APART FROM FROM GLAUCOMA SNEAKING in taking away side vision or field vision....Age related needs updating to a more less intrusive on our age, i don't know what was worse the condition or age related, so everyone why not start our page or forum for suggested names and kick out age related...PHEW...If you have a healthy diet and you can eat berries or strawberries, grow your own less expensive, black berries, red or orange peppers, coffee or the odd drink will not make any difference as long as you eat your veggies, very good for the macular is spinage or green leafy cabbage(mmmmm) an...d get on with life..Feeling sorry for ones self is normal and having a bad day so what, you are entitled to a good cry, why me and wallow in self pity from time to time..I landed myself a boyfriend who is younger than myself, great life, registered blind and having the time of my life....chin up head high,there is life WITH AMD.....DAWN...
Well , I can beat you on the age thing .I have had to have injections in my left eye.
I am 'only' 38.
It is indeed almost always age related but there are a relatively few rarer exceptions.
I think it is even more frustrating if you are unlucky enough to fall into this bracket.
The good news is there is more they can do now than ever before. So don't despair.
The treatments can be , and usually are , amazingly effective. And the success rate is extremely high.
It is incredibly scary but it isn't the end. The treatments ,such as injection , can stabilize and even improve the situation very quickly. Even in both eyes. After that you are monitored closely and given excellent care.
The injections I have had have worked brilliantly.
Treatments are still improving all the time too.
I hope this can help a little.
Last year after the Fundus photo and the OCT Scan my Opthamologist diagnosed me with early stage macular degeneration. His words exactly were "You might have early stage Macular degeneration". When I questioned him more about it, he showed me the imaging printout (not the Fundus photo) and circled something and said "that might me Drusen and that might be Drusen". He wanted me to begin the vitamins he sold because according to him, "you can't find the ones representative of the ARED's 2 study because there was a stockpile of vitamins sitting in warehouses from the first ARED's study that needs to be sold firstb! I knew he was wrong because I had been seeing Presser Visions ARED's 2 on the shelves but I didn't say anything and purchased the eye vitamins he sold. Every time I see him he asks if I need to purchase more vitamins. I've heard him ask others the same question while I'm waiting in the waiting room. I stopped buying his vitamins because I found MacuHealth. I use it instead and supplement it with vitamin E, vitamin C, Zinc Picolinate and copper.
A month after his diagnoses, I went to another doctor who performed the same tests using the same machines and was told I do NOT have Macular Degrneration.
No, I have not mentioned this to the first doctor because he's short with me most times. Doesn't much like to explain things and said I need to stop reading about it and thinking about it!
I don't know who to believe. The second doctor recommends using vitamins but does not sell them.
I'm riddled with anxiety about this. has anyone had similar experiences?
Hi lesliep, I just came across your post and it looks like none replied to you. As its been a while don't know if you are still on the forum but thought I'd offer my opinion for you!
Firstly print yourself an Amsler grid and check monthly. Any wavy lines go straight to Dr.
Secondly, healthy eating incl green leafy veg will help eyes / macushield supplements and areds2 are definitely available. It sounds like your 1st Dr is a bit greedy! Personally I would not return to him.
Thirdly contact the Macular Society, they have lots of info you can trust and a great helpline.
Best wishes to you going forward.
Hi I am only 23 and seeing lots and loads of floaters. My myopia degree is -16.50, Im starting to see wavy lines on the amsler grid. Any suggestion on how to stop the progression odf this condition.? I have a very long eyeball,
I am 37 I went to get an eye exam and the eye doctor told me and show me that have some yellow spots. I asked what whats that and she said in older people could be muscular degeneration but also could that I was born with it. My last eye exam was 3+ years ago and she said my vesion has not really change. I am freaking out. She keep telling me nothing worry about it she did not tell me if those spots were in the macula now thanks to google I am having a panic attack
