Anyone have intermediate Macular Degeneration

Posted by prayingtolucy @prayingtolucy, Feb 12 6:44pm

Hello,
I'm interested in hearing people IMD.
I like reading people's stories, how they deal with it, what they are experiencing and if they've learned of new treatments or cures coming down the pike.
I pray every day that I can grow old while maintaining my good central vision. I pray that I am young enough to one day benefit from more permanent treatments, less invasive treatments, and even a cure. Research has been ongoing for such a long time that sometimes I think there may never be a cure. I will not give up nor will I stop praying.
I hope we can get a chat going here. ❤️

Interested in more discussions like this? Go to the Eye Conditions Support Group.

@prayingtolucy

They most likely didn't have all of the knowledge, research, and treatments, or even better treatments on the horizon back when your mom had it. How long ago was it that your mom was diagnosed before being blind? Was her peripheral vision good? Was your mom ever a smoker? Not judging just curious.
How long have you had Macular Degeneration? How old were you and how old are you now?
Are you taking AREDS vitamins, if you are but no shots then you're most likely intermediate.
Genetics are a mystery. My dad was diagnosed in 2015, I had no clue. I'll be getting his records on Monday so I can the notes. I'm sure my father was never informed of the importance of following up etc. I only know what I know from my own research and asking questions. Otherwise I left the office not knowing or being informed of a damn thing. I'll be getting my records as well since I saw my opthalmologist annually and have no clue when I even had early stage. I do believe now, thinking back on my dad that he was probably centrally blind but functioned so well. His sister has it as well. I just learned that within the last year.
I pray every day that I remain stable and that I'm you g enough to benefit from some the treatments coming with stem cells and genetic reversal (I think that's what it is called).
I have a lot of life ahead of me to live and I want to see it crystal clear.
Stay healthy, at a good weight, eat well AND try to stay away from stress. I was told to treat it like I would my heart. There's a connection. Talk to you soon. 😊

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Please find an up-to-date and reliable ophthalmologist who specializes in macular degeneration

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@sjs1

I would be interested to know how many females are diagnosed with AMD are also on HRT. My MD wants me to take it for the first time at age 75 because of my intermediate dry AMD condition. He says
that estrogen is protective and surely I would not have this condition if I had been on HRT. He is a MD who just practices preventive medicine. He is not a retina doctor. He says it will help with the progression. I haven’t taken it so far because my other MDs take the conventional route. It is not conventionally advised to take low dose estrogen at 75. I think it’s important to know how to ask ChatGPT questions about the supplements other than ARED2 that are helpful. All the retina specialists are just going to give you the routine or conventional take: Take AREDS2 and wait, look at the amsler chart. I found out from “23 and me “ that I have the worst prognosis, thecdouble Y402H alleles in the CFH family from both parents but my AMD did not start in the fifties. My CFH DNA with these mutated alleles have the worst prognosis. I use the off label longevity drug rapa or sirolimus very low dose 5 mg with a MD’s prescription and supervision. It has been 8 to 10 years now still diagnosed with AMD and it’s at the intermediate dry. I use a low vision optometrist for driving glasses. I take more supplements than conventionally advised by a retina soecialist like Mitq foreyes, NMN, NAC, Melatonin etc all found from reading articles on intermediate dry AMD research and from the advice from a science website Admin who also has dry intermediate I haven't been to Wills, Wilmer or Duke, the top eye hospitals near me but I will visit each to introduce myself so tha when the clinical stems cell trials are more frequently conducted I might be considered given my DNA mutations. chstGPT gave me the names of the intermediate dry AMD studies currently underway and the MDs there who are the principle intermediate dry AMD researchers. I use the eyecharger device, a red led 670 hz flashlight used in the mornings for 3 min each eye to stimulate the mitochondria of which ChatGPT approves and this device is the result of the research if Dr Jeffrey at Univ of London neuroscience dept. Of course my retina doctor had never heard of eyecharger although photo modulation is now being researched and may be implemented in clinical settings for intermediate dry AMD. AMD is a disease of mitochondrial dysfunction. Most with AMD disease (like 50 percent) will have a DNA mutation component which causes mitochondrial dysfunction and disruption to the eye’s immune system in those who environmental factors are also present like having being a smoker —but hopefully not the worst scenario like mine. Research ChatGPT found research articles that report that my DNA mutations quickly progress to geographic atrophy. It’s very important to take AREDS2 and see a retina doctor 2x a year. There are subscription devices you can use that are a home monitoring device. You look into them daily and it reports back to monitoring station to gauge if your eyes have changed for the worse. I looked into it - didn't like the bureaucratic management. At my age and for the long time I have been in the intermediate stage I can’t just “wait and see “ for just the FDA approved modalities like those who can who are diagnosed in their fifties,

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I reread your above post regarding 23 and me. That one is a swab that is mailed away, correct?
You are 75, have had intermediate AMD for at least 10 years? And did not have it in your 50's. If you were diagnosed at 65 with intermediate AMD, how old were you when you were diagnosed with early stage AMD? Is 65 years old the age in which you became aware of the AMD for the first time? I'm just curious if you were getting regular dilated eye exams in your 50s and even younger.
I'm just trying to fit all of this new info into my brain and make sense of it.

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I cant remember I was working as temp traveling and no doctor visits. If you were diagnosed with the pattern d. disorder at Wilmer you don't have AMD. Please go back to them and confirm. All this discussion is not useful to you then.

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@prayingtolucy

I reread your above post regarding 23 and me. That one is a swab that is mailed away, correct?
You are 75, have had intermediate AMD for at least 10 years? And did not have it in your 50's. If you were diagnosed at 65 with intermediate AMD, how old were you when you were diagnosed with early stage AMD? Is 65 years old the age in which you became aware of the AMD for the first time? I'm just curious if you were getting regular dilated eye exams in your 50s and even younger.
I'm just trying to fit all of this new info into my brain and make sense of it.

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You dont have AMD if Wilmer says its pattern dystrophy. It’s a completely different disease and it does take decades to get worse according to chatGPT:

Advanced diagnostic tools, such as fundus autofluorescence (FAF), optical coherence tomography (OCT), and genetic testing, can aid in distinguishing between the two conditions. For instance, pattern dystrophy often presents with specific patterns of pigment deposition and may show characteristic findings on imaging studies that differ from those seen in AMD. Genetic testing can identify mutations associated with pattern dystrophy, providing a definitive diagnosis.
NCBI.NLM.NIH.GOV

In summary, while pattern dystrophy and AMD share overlapping features, careful clinical evaluation combined with advanced imaging and genetic testing can help differentiate between the two, ensuring appropriate management and

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@marthadean

Please find an up-to-date and reliable ophthalmologist who specializes in macular degeneration

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You're telling me to find an opthalmologist who specializes in Macular degeneration??? Where the hell did that come from??? I'll have you know that I have an excellent retina opthalmologist who specializes in diseases of the macula such as Macular Degeneration. I also have a reputable primary opthalmologist who once worked for the Mayo clinic. And I have also been seen by a retina specialist at the Wilmer eye institute at John's Hopkins University. You're the one telling me you don't have all of the particulars about your MD. I only mentioned that doctors are not always forth coming with their diagnosis. That doesn't mean I'm some backhill idiot who hasn't been seen by reputable and educated ophthalmologists. Or that I haven't been doing research and asking questions at my appointments.
I'm sorry I tried to share with you that treatments and research have come a long way probably even since your mom was here and blind from AMD.

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@sjs1

I cant remember I was working as temp traveling and no doctor visits. If you were diagnosed with the pattern d. disorder at Wilmer you don't have AMD. Please go back to them and confirm. All this discussion is not useful to you then.

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He only said "likely" a pattern disorder but could not tell me which one. And we'll have to watch and see how shapes over time. But my notes from him still have AMD in them. I've had several opinions and not one agrees with Wilmer.
I can't live on a let's see if it takes shape.

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@prayingtolucy

He only said "likely" a pattern disorder but could not tell me which one. And we'll have to watch and see how shapes over time. But my notes from him still have AMD in them. I've had several opinions and not one agrees with Wilmer.
I can't live on a let's see if it takes shape.

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And again another hereditary disease unknown by anyone on either side of my family.

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@sjs1

You dont have AMD if Wilmer says its pattern dystrophy. It’s a completely different disease and it does take decades to get worse according to chatGPT:

Advanced diagnostic tools, such as fundus autofluorescence (FAF), optical coherence tomography (OCT), and genetic testing, can aid in distinguishing between the two conditions. For instance, pattern dystrophy often presents with specific patterns of pigment deposition and may show characteristic findings on imaging studies that differ from those seen in AMD. Genetic testing can identify mutations associated with pattern dystrophy, providing a definitive diagnosis.
NCBI.NLM.NIH.GOV

In summary, while pattern dystrophy and AMD share overlapping features, careful clinical evaluation combined with advanced imaging and genetic testing can help differentiate between the two, ensuring appropriate management and

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Why is it that none of the other doctors agree? I've done my research on pattern dystrophy and there are a bunch of them. But I have no clue which Wilmer thinks I have. There's no cure for it either but some of the AMD treatments benefit it later down the line. But, even the other doctors who diagnosed me with intermediate AMD told me the prognosis is 20-30 years.

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@sjs1

You dont have AMD if Wilmer says its pattern dystrophy. It’s a completely different disease and it does take decades to get worse according to chatGPT:

Advanced diagnostic tools, such as fundus autofluorescence (FAF), optical coherence tomography (OCT), and genetic testing, can aid in distinguishing between the two conditions. For instance, pattern dystrophy often presents with specific patterns of pigment deposition and may show characteristic findings on imaging studies that differ from those seen in AMD. Genetic testing can identify mutations associated with pattern dystrophy, providing a definitive diagnosis.
NCBI.NLM.NIH.GOV

In summary, while pattern dystrophy and AMD share overlapping features, careful clinical evaluation combined with advanced imaging and genetic testing can help differentiate between the two, ensuring appropriate management and

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Also, I've had all of that testing you mention above. The OCT, the FAF. And I have two different outcomes.

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