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Macular Degeneration vs AMD

Posted by kbirt @kbirt, Mar 21, 2024

I will start off by saying that I will soon be 77. I was originally diagnosed with MD when I was 36. My ophthalmologist said that he had never seen it in some one that young. He had a picture of my eye in his office for a long time. Although I have worn glasses since then, I have never had any major eye problems until my mid 60's. Now my central vision is mostly gone to where I have had to stop driving for my safety as well as the safety of others. My new eye doctor says I have dry AMD.
My question is: Is it still age related when I had it so young? Also, I was an aluminum welder for about 10 years prior to my first diagnosis. I recall many times of getting flash burns to my eyes. Could this have been the reason for my early diagnosis?

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prayingtolucy2 | @prayingtolucy2 | 5 days ago

I can see you posted your discussion almost. Year ago and it doesn't look like you've received any responses. I'm not an expert but I was also diagnosed young considering it is an "Age" related disease. I was 54 when I learned I have intermediate Macular Degeneration (medium drusen basically), I'm 56 now. It's rare to receive a diagnosis under the age of 55. I saw my opthalmologist annually with dilation for years and was always given a clean bill of health then covid hit And I couldn't get an appointment for like two years. I don't know when I started early because two years doesn't make sense for that kind of progression. So I'm thinking I may have started at 52, or younger but never told. The eye doctor shared nothing with me but to take AREDS and eat lots of healthy greens. Eat for your eyes as you would for your heart there is a correlation. Then I got a 2nd opinion from John's Hopkins Wilmer eye institute retina specialist and was told it is likely a pattern dystrophy. Couldn't tell me which one we'll have to wait and see. Take AREDS and eat lots of leafy greens. Then I saw a 2nd retina specialist and I'm told it's AMD. Now I have a primary opthalmologist and a retina specialist saying it's one thing a prestigious retina specialist telling me something else. Now what? Today, I order all of my eye appointment records so I can read the notes from over the years. One thing I know is the records I had sent Hopkins had information and instructions I only read about and was never told. I only learned I'm intermediate because I saw it on my records. They only thing that all of the doctors that match is they all think it will take decades to affect me. Not sure how they know that but it is their belief.
For you, Its unbelievable you were diagnosed at 36. You've had it close to 42 years? You had close to 30 years before any vision issues and now at 77 you're just starting to have more serious vision issues? And you are dry AMD? I'm wondering if you have a pattern dystrophy.
It seems you progressed extremely slow which is great. (I hope I do) Have they said intermediate or late stage dry? Are you receiving injections for the dry? There was recently an injection approved for GA (late stage dry AMD). Have you asked your retina specialist about the welding? It seems possible. What about a family history?
Have you had 2nd and 3rd opinions?
As far as the word "Age", from what I have researched this is truly an age related disease and it progressed slowly for younger people like you were and I am.
Treatments must have come a long way even since you were first diagnosed to where you are today. Are you still independent, driving, reading, watching tv, recognizing faces? I hope you see this message, sorry it is so long. I hope to hear back and to chat. Feel free to send a private message.

REPLY
1 reply
kbirt | @kbirt | 5 days ago
In reply to @prayingtolucy2 "I can see you posted your discussion almost. Year ago and it doesn't look like you've..." + (show)
@prayingtolucy2

I can see you posted your discussion almost. Year ago and it doesn't look like you've received any responses. I'm not an expert but I was also diagnosed young considering it is an "Age" related disease. I was 54 when I learned I have intermediate Macular Degeneration (medium drusen basically), I'm 56 now. It's rare to receive a diagnosis under the age of 55. I saw my opthalmologist annually with dilation for years and was always given a clean bill of health then covid hit And I couldn't get an appointment for like two years. I don't know when I started early because two years doesn't make sense for that kind of progression. So I'm thinking I may have started at 52, or younger but never told. The eye doctor shared nothing with me but to take AREDS and eat lots of healthy greens. Eat for your eyes as you would for your heart there is a correlation. Then I got a 2nd opinion from John's Hopkins Wilmer eye institute retina specialist and was told it is likely a pattern dystrophy. Couldn't tell me which one we'll have to wait and see. Take AREDS and eat lots of leafy greens. Then I saw a 2nd retina specialist and I'm told it's AMD. Now I have a primary opthalmologist and a retina specialist saying it's one thing a prestigious retina specialist telling me something else. Now what? Today, I order all of my eye appointment records so I can read the notes from over the years. One thing I know is the records I had sent Hopkins had information and instructions I only read about and was never told. I only learned I'm intermediate because I saw it on my records. They only thing that all of the doctors that match is they all think it will take decades to affect me. Not sure how they know that but it is their belief.
For you, Its unbelievable you were diagnosed at 36. You've had it close to 42 years? You had close to 30 years before any vision issues and now at 77 you're just starting to have more serious vision issues? And you are dry AMD? I'm wondering if you have a pattern dystrophy.
It seems you progressed extremely slow which is great. (I hope I do) Have they said intermediate or late stage dry? Are you receiving injections for the dry? There was recently an injection approved for GA (late stage dry AMD). Have you asked your retina specialist about the welding? It seems possible. What about a family history?
Have you had 2nd and 3rd opinions?
As far as the word "Age", from what I have researched this is truly an age related disease and it progressed slowly for younger people like you were and I am.
Treatments must have come a long way even since you were first diagnosed to where you are today. Are you still independent, driving, reading, watching tv, recognizing faces? I hope you see this message, sorry it is so long. I hope to hear back and to chat. Feel free to send a private message.

Jump to this post

Thank you, I had forgotten about this message. I will be 78 soon and not driven for about 5 or 6 years. I could not pass the vision test. Faces are a total blur to me. Sometimes I can see by not looking at aa item. No problem seeing a bird or a plane in the sky. Unfortunately, I am very limited financially, so I have not seen any eye doctor for a number of years. Fortunately, with the help of a magnifying glass, I still live alone in my own home. I am also undergoing chemo treatment for T-cell lymphoma every three weeks.

REPLY
1 reply
prayingtolucy2 | @prayingtolucy2 | 5 days ago
In reply to @kbirt "Thank you, I had forgotten about this message. I will be 78 soon and not driven..." + (show)
@kbirt

Thank you, I had forgotten about this message. I will be 78 soon and not driven for about 5 or 6 years. I could not pass the vision test. Faces are a total blur to me. Sometimes I can see by not looking at aa item. No problem seeing a bird or a plane in the sky. Unfortunately, I am very limited financially, so I have not seen any eye doctor for a number of years. Fortunately, with the help of a magnifying glass, I still live alone in my own home. I am also undergoing chemo treatment for T-cell lymphoma every three weeks.

Jump to this post

OMG! Have you asked about financial assistance? Or reached out to any of the foundations out there? Brightfocus for instance. You may benefit from injections, I mean it seems like you have late stage with the symptoms you have described. I have met so many people on this site who have been getting injections for wet for many years and they still drive. One man is 84 and has been getting shots for over 17 years he drives, watches TV, reads and recognizes faces. Since you haven't been in a few years you may not be dry anymore, you may be wet and there are several injections even to bring vision back. Last year the FDA approved the first injection for GA late stage dry if you are still dry.
You could still have a lot of vision left into you.
Do you have a spouse or kids who can help you find some financial assistance to back to a retina specialist and maybe the injections.

REPLY
prayingtolucy2 | @prayingtolucy2 | 5 days ago

If you don't I would love to try and help you find some assistance. It's worth a try.

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