I Share All Your Symptoms...

By CommunityMember4752cd

2 min read

After reading how AMD can and will cause blindness (and experiencing the rapid road to it myself) I resigned to this fate though not without a fight...

In looking back at my AMD I realize symptoms I'm having are ALL described by members of this very helpful website, and in great detail too! Most helpful indeed!

Retina specialist visit

Since a year or two ago I needed to change glasses much too often so I was referred to a retina specialist who diagnosed wet AMD in one eye and offered an injection treatment. I had to ask: which drug or brand? He said "Avastin", I looked it up and found it inferior to others, needs more frequent shots, AND is NOT FDA approved! When I questioned him he said "ask your health insurance." I did and was told "Have him contact us."

He never did. In addition, he told me casually, as I was leaving his office, that I may have a little GA on my other eye.

More confusion

To increase my confusion, before I saw this RS, I had seen a few ophthalmologists who, after tests, told me I had "just a little glaucoma". Another doctor said I have Wet on one eye, but Dry on the other with "maybe" a little GA on both! What kind of diagnosis is this? Have I confused you too? Haha!

After about 2 months I saw a new RS, this time with many good reviews. He offered and administered an Eylea injection from a sample he had, and said he'll contact my health insurance and to see him in a month. Great! By the way, I didn't have any reaction whatsoever from the Avastin or Eylea injections and wonder what it may mean...

More symptoms

Meantime, I am living one by one ALL the symptoms so thoroughly described on this website, to which I owe so much for its great information. I'm now focusing more on coping with my quasi blindness on the wet eye (large brown, grey or black cloud in the center of the eye...)

I can't recognize faces

I moved around some furniture; bought a few small flashlights to look for things I need even inside the refrigerator lol! No more street walks after dark as I may fall; I asked some neighbors to say hello to me if I don't...as I can't recognize faces; I will need more things, one of which, a magnifying page; must try reading glasses 3.25 or 3.50; or I'll find out where to go for low vision glasses; and many more things.

A new challenging life

In sum: a new, more difficult life, but happy to find help here to go around it. THANK YOU ALL at MacularDegeneration.net! :)

P.S. I saw here complaints that doctors didn't give any instructions for after the injection care. I too didn't get any instructions, so I called my "good reviews" RS: (1) My eye is scratchy do I need drops and which kind? (2) I love swimming underwater without goggles, how long after the injection can I do that? NO ANSWER!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MacularDegeneration.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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Brown Eyed Girl Moderator
<inline-mention username="CommunityMember4752cd" user-id="6697404"/> thanks for sharing your story with us. We're glad you've found our Community so useful. I've learnt a lot here, too. Avastin is permitted to be used "off label" in the US for the treatment of wet macular degeneration. Evidently some insurance companies won't pay for more expensive treatment until Avastin has been tried. If Eylea is what you want, I hope you can find a way to stay on it. I've just started on Eylea in Australia. I don't have any reaction to the shots, either, but many people suffer from the effects of the Betadine used as an antiseptic. Does your doctor or technician rinse your eyes afterwards? Mine doesn't, but he uses dilated Betadine. The GA business can be confusing. I decided a long time ago that this isn't an exact science, and what some doctors consider to be GA, others class as still in the intermediate stage. I had that happen to me. You can have the dry form (at any stage) and the wet form concurrently, so that makes the diagnosis confusing. My RS gave me a sheet which said no water in the eye for three days after the injection. I don't shower for three days, if possible, but that's probably taking it too far! He hasn't mentioned drops to me, but I try to wait three days before putting drops in, just to be extra careful. This gets a bit uncomfortable, because me eyes are always dry. Sometimes I try to think of something sad to bring a tear or too, and that moistens my eyes, but I don't recommend this method! Does your doctor think there is a possibility that your vision may improve after more shots in your wet eye? Wendy, Patient Leader.
1. Sharon Moore Moderator
 <inline-mention username="Brown Eyed Girl" user-id="3141081"/> after I was given my first injection I was given a couple of single use eye drops and told to use drops as often as needed for irritation. You may want to ask your doctor if they are right for you. Sharon, patient leader
2. Brown Eyed Girl Moderator
 <inline-mention username="Sharon Moore" user-id="3129425"/> yes, I will ask about these. I'm sure they'd be ok. I'm just being overly cautious. Wendy, Patient Leader.
Sharon Moore Moderator
<inline-mention username="CommunityMember4752cd" user-id="6697404"/> I am sorry you weren’t given any instructions for post injection care. I wrote an article about my routine to prevent infection compiled from best practices at well known facilities. I thought you might find it helpful. <a href='https://maculardegeneration.net/living/routine-prevent-eye-infection' target='_blank'>https://maculardegeneration.net/living/routine-prevent-eye-infection</a>. Warm regards, Sharon Moore patient leader
CommunityMemberf5e219 Member
I need to know how long it is after being duagnos d that your vision starts to go 
1. Brown Eyed Girl Moderator
 <inline-mention username="CommunityMemberf5e219" user-id="9821783"/> I think everyone is different. I didn't notice any change much for ten years, but I caught it early. Both of my parents had it, so I was on the lookout. Have you been diagnosed with the dry form or the wet form? Wendy, Patient Leader.
AnneGogh Member
Regarding eye drops: Originally my Retinal Specialists' office instructed patients to use prescription eye drops. They've since changed that, and now instruct patients to use four OTC drops (not the kind that advertise getting the red out) for four days. I find it soothing for my itchy/scratchy post-injection eye, and also because my eyes are dry anyway, and I use at least four a day on a regular basis.
1. Sharon Moore Moderator
 <inline-mention username="AnneGogh" user-id="3110608"/> it’s interesting how the recommendation for using drops varies among doctors. I am given single use drops after my injections. Did your doctor recommend a specific type of OTC drops? Regards, Sharon Moore patient leader