Newly diagnosed with Macular Degeneration

Posted by Tracey001 @tracey001, Aug 18, 2011

I just found out that i have Macular Degeneration possibly Macular Dystorphy and I am scared to death. I haven't eaten in three days and I feel a huge sence of hoplessness. I would really like to talk to others who have it and how they are coping

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Hello,
I was told I have drusen two years ago. I had no idea what it is and there was no urgency related to me except we'll keep an eye on it. Two years later, this past June, I'm told it's soft drusen and intermediate dry AMD both eyes. Wait a second I was never told I had early AMD. I take the AREDS2 and I exercise and eat 100% healthy everyday to hopefully slow the progression... These are the things they tell us to do to stop the risk of developing it yet I still have it. I am 56, no underlying health conditions, the Amsler grid isn't crazy or anything. I did find out two weeks ago that my dad had it (I believe my father was ill informed and left to go blind, he never told me) and his sister has it, dry in one eye and wet in the other. She gets injections in the wet one. I have been a nervous wreck and I feel my future will be dark, my future plans are destroyed and I feel dead.
I joined this group hoping to find positive things about treatments and I have. One man was started eye injections last year and his life is still as it was with the promise from his doctor that he will always be able to drive. Another wrote that her father was diagnosed with late stage /wet in one eye and dry in the other. Her dad had been getting eye injections for 17 years. He drives, is an advate reader, watches TV and says the shots are easy peasy.
I did see a retina specialist who thinks I mostly likely have a pattern Dystrophy which also runs in families but now that I know my family history I believe it is AMD. I am seeing a different retina specialist on Sept 3.
I don't want shots in my eyes but keeping my vision is much more important to me than the needle.
I hope this information has been helpful. It made me feel a little better.
PTL

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Also, I know it's hard but try not to Google. A lot of the information is taken from other websites that have outdated information. The worst case scenarios are always presented. My niece who is a nurse practitioner with her PhD told me that she has tons of patients with AMD and they all still see great. Many have had it for years and years. Out of her 170.patientsnonly one has been told she's going blind and that could be because she didn't keep up with eye injections. My niece told me to only search things that will help me, like Mediterranean diets plans etc.
Good luck, stay positive, stay in touch via this website. Pray 🙏 prayer is powerful.

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@btednes2015

I have been diagnosed with it in my right eye, and my doctor wants to start shots. I am reluctant as it seems to be slow growing in the comments.

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@btednes2015
From what I've learned since my diagnosis, I'm only 56, is shots are only for wet AMD which progresses very fast unlike dry which progresses slower unless it turns to GA... Shots for dry were recently approved but only recently.
Unless you have late stage AMD an opthalmologist should not be starting eye injections of any kind
Do you know if you have wet or dry AMD?
You have to advocate for yourself. The doctors will not do it for you.

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@prayingtolucy

@btednes2015
From what I've learned since my diagnosis, I'm only 56, is shots are only for wet AMD which progresses very fast unlike dry which progresses slower unless it turns to GA... Shots for dry were recently approved but only recently.
Unless you have late stage AMD an opthalmologist should not be starting eye injections of any kind
Do you know if you have wet or dry AMD?
You have to advocate for yourself. The doctors will not do it for you.

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I have dry AMD and am not getting shots. The doctor started talking about giving me shots, but I said I’d rather wait and let it run its course and that’s what we’re doing

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@btednes2015

I have dry AMD and am not getting shots. The doctor started talking about giving me shots, but I said I’d rather wait and let it run its course and that’s what we’re doing

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Do you have late stage Dry AMD, GA? I've not heard of shots for dry AMD before the late stage/GA.
Is this new?
The only treatment I've heard of for early to intermediate dry AMD is the AREDS2 vitamins and a healthy diet like the Mediterranean diet. Which I love so that is a good thing.
Good luck and stay positive.

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I also have been diagnosed with Macular Degeneration going on about 6 years now. I have the type which is “dry macular”
I was advised by dr. years ago to take vitamin called “Areds”.
So far my condition has not worsened much.
With “Wet Macular” there are eye injections you can receive.
I have many floaters but try not to let it ruin my day. I remain positive and live my best life.

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@btednes2015

I have dry AMD and am not getting shots. The doctor started talking about giving me shots, but I said I’d rather wait and let it run its course and that’s what we’re doing

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My understanding is dry macular treatment is with eye vitamins not injection.
I have dry also and my specialist informed me of this.
Wet macular is treated with injections.

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An optometrist did an exam about six months ago and said I have some drusen and that I should take AREDS, then a few minutes later, he looked at the pictures again and said no, I did not have to take AREDS. I was relieved as I have read not so good things about the AREDS supplement. But now I am worried that he just doesn't know what he is doing, so am seeing an opthamalogist soon to see what the heck is really going on with my eyes. I have an older sister who has wet AMD in one eye, so am a bit worried that is in my future...

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I’ve been taking AREDS for over a year and not had a problem at all. Don’t be afraid to take them if you need them

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My husband was diagnosed with AMD 12 years ago. Initially he had the dry form in both eyes and was told to use PreserVision Areds II twice a day which can slow progression of intermediate to late-stage AMD. He has had no issues taking the supplements and still takes them twice daily.

To understand benefits, risks and side-effects the National Eye Institute provides this information: https://www.nei.nih.gov/research/clinical-trials/age-related-eye-disease-studies-aredsareds2/aredsareds2-frequently-asked-questions.

In 2014, he developed the wet form of AMD in his right eye and began receiving Avastin injections to treat this condition. Last year in August we were told he has active choroidal neovascularization membrane in his right eye. This year in May, the edema/subretinal fluid is still present and he has an atrophic disciform scar. His vision in the right eye is 20/800. He also has astroid hyalosis (a type of floater) and had cataracts in both eyes. The Astroid hyalosis is severe enough now to cloud his vision in both eyes. We just had his second cataract surgery Tuesday. In two weeks we see his retina specialist again to determine whether it would be of any benefit to have a vitrectomy to remove the floaters and/or begin injections again with Eyelea or Lucentis to help treat this eye. When you develop CNM or scarring of the retina you are entering the end-stage of wet AMB. He has profound visual impairment in his right eye. Our next decision will be whether or not to treat his right eye with more surgery or injections. Neither option will provide much, if any significant improvement to his vision in the right eye. He is 84 now and has mild cognitive impairment, possibly Alzheimer's and the surgeries have been difficult. Also he hates traveling more than 200 miles for each eye appointment. We live in a rural area with no retina specialists available near home.

My recommendation is to keep regular appointments with your Ophthalmologist, take the Arends II formula if it is recommended and use your Amsler grid regularly. Seeing wavy lines or a blank or dark area in the middle of the grid is a good indication that your eye is advancing to the moderate stage and you may have developed developed wet AMD. Note that wavy lines on an Amsler grid do not always mean you have age-related macular degeneration, or AMD. A cyst or macular pucker can also cause waviness. Your Ophthalmologist will start injections when you are showing signs of fluid build-up in your eye.

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