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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 | @prayingtolucy | 4 days ago
In reply to @sjs1 "I cant remember I was working as temp traveling and no doctor visits. If you were..." + (show)
@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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You're not sure when your last appointment was before your intermediate AMD diagnosis? Im trying to keep our messages separate but together. Im trying not to scramble them up.

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sjs1 | @sjs1 | 4 days ago
In reply to @prayingtolucy "Why is it that none of the other doctors agree? I've done my research on pattern..." + (show)
@prayingtolucy

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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You have pattern dystrophy if prestigious Wilmer says you do because they have the better experts, smarter top docs, like at the Mayo Clinic and expensive machines to diagnose this. The others have misdiagnosed you . Unless Wills or other prestigious clinics say its AMD then you need further testing. AMD does not take decades to progress its rather quick to progres but pattern dystrophy can take decades. It’s not AMD and it not a predictor of AMD. AMD is not drusen its just another word for word macular degeneration.
I wont respond any further. You are very lucky you don't have AMD and should not worry. I would take a prestigious eye clinics word as gospel.

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sjs1 | @sjs1 | 4 days ago

This is what i do :

I have had intermediate dry AMD for about 10 years- Age 75

Friday : 5mg low dose rapamycin ( by prescription) , Areds2
spermidine (wheat germ) curcumin, asthanthin, H2 water
Sat and Sun CoQ10, PQQ, L-carnitine, reservatrol, Areds2
Monday-Thurs- Spermicide, Curcumin, NMN, Ginkgo B., Pycnogenol, PQQ
Areds2, Fenofibrate (new- activates PPAR alpha which clears cholesterol from the retina - prescription), Melatonin
Use eye-charger- red light flashlight 670 3 min each eye mornings daily (Dr Jeffrey -Uni. of London -photo modulation)
Fast 3 times a week for 16 hours - intermittent fasting
At this date my prognosis is poor. I have a pair of Y402H gene allele mutations (23 and me) which lead to blindness. I need a medical dna test just done soley for my eyes. I will try to shop this medical dna report around by letter or by personal intro to the physicians at the leading eye hospitals etc hoping to get on the list for stem cells or other genetic solutions one day when and if they become available. It’s uncommon to have both alleles and it has a bad prognosis.

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tigger317 | @tigger317 | 3 days ago
In reply to @prayingtolucy "I'm so sorry. I wish I could give you words of encouragement but I'm still learning..." + (show)
@prayingtolucy

I'm so sorry. I wish I could give you words of encouragement but I'm still learning about the disease myself and I'm still confused. I've been trying to post information as I am learning it.
Maybe, the member sjs1@ can give you some advice. He/she seems to have a lot of valuable information.
How old are you? When were you first diagnosed and what stage Early, I intermediate (Recommended AREDS2), or late (already wet)?

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Thank you ! I am 78 ...I was diagnosed about 2-3 years ago with dry over a year ago with wet in both eyes.. I was just told I have atrophy in the right eye so probably stop shots in that eye..

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tuarlo | @tuarlo | 3 days ago
In reply to @prayingtolucy "The reason I am thinking about Bascom in Miami is because they are one of the..." + (show)
@prayingtolucy

The reason I am thinking about Bascom in Miami is because they are one of the top, if not the top retina clinics in the country and I'd like to have them take a look and give their opinion. I would not expect to make them my primary retina specialist unless they discovered something so amazing or disturbing that it warranted my relocating to Miami. Plus, people get 2nd and 3rd opinions all of the time.
Yes, I've been told by the Wilmer Eye Institute (JHU) and my primary Retina specialist as well as my primary opthalmologist that they believe it will take 20-30 years before the Macular Degeneration affects me.
Doctors are human just like the rest of us just because they think this will take.decades to progress doesn't mean it will. It's not unheard of to be diagnosed with it in your 50s, and yes, it is an Age related disease that progresses faster for the elderly 70s and up, than it does in someone much younger like 50s and 60s, unless the person brushes it under the rug and doesn't take it seriously. I believe a lot of people do especially younger more healthy people because they do not believe it could happen to them.
I am a researcher, that's what I do and enjoy doing. I can't just sit back not trying to figure out what is going on inside of me. I want to know everything about it and any and all research that is going on. I want to know how it is affecting others with it and how they deal with it. Also, how the treatments are working for them if they have progressed to wet or dry . I never want to be blindsided. Education is the best medicine. This is a part of me, it's a part of my life now and I feel if I sit back and do nothing, just "Satisfied" because doctors have told me they believe I have decades before it affects me that I'll become lazy about it, brush it under the rug and end up missing something when it's available. I will just be "satisfied," with it. I will never just be satisfied. Even if the stem cell becomes FDA available and it's a success, I will never let my guard down medical successes fail all of the time.
You do realize that research and treatments have jumped forward by leaps and bounds over the past few years? There's even an injection for GA, that's newly approved. Last year there was absolutely nothing available for dry AMD but AREDS2 and a healthy diet, honestly, I'm more puzzled by that one than anything else. Today, there are multiple treatments for the wet stage as well.
So to tell me not to chase the "illusion" for a cure is like telling me to give up, or that you have given up. I'm only in my 50's, I have a lot of life ahead of me to live. There are a lot of new treatments close to approval and release even possible cures. I'll never give up hope of a cure. I believe something good will come while I'm still able to benefit from it.

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Prayingtolucy, thank you for these comments. They inspire me.

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kathy23 | @kathy23 | 2 days ago
In reply to @prayingtolucy "Hello, Were you diagnosed with wet initially? That's the only way they'd give you shots, right?..." + (show)
@prayingtolucy

Hello,
Were you diagnosed with wet initially? That's the only way they'd give you shots, right? How old are you? Are your vitamins AREDS2?
Are you seeing a retinal specialist and a general opthalmologist?
I haven't heard of an oral treatment coming. I have heard of the photobiomodulation light therapy (not a lot of reviews), and eye drops that are in research, possible gene therapy and stem cell regrowth/patch. I just hope I'm able to benefit from something one day. I've been told today, this is not a blind-death sentence. I hope that's right.

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Yes, wet initially. 74. The vitamins I had first went up to $90 and I purchased them through Amazon. The ones I have now are Vision Elements through my doctors office, around $60 for 3 months. According to my doctor, the crucial ingredients are Lutein 10mg, Mesa-zeaxanthin 10mg, Zeaxanthin 2mg... It also contains Aztec marigold flower and sunflower ingredients, and Vit E. I go to a new retinal specialist and have had a low vision specialist recommended to me after seeing double (from the 2nd operation) for 3 months. Not a problem now. It is really good to hear of help in the works in form of new developments! (thanks) I hope they go at warp speed.

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sjs1 | @sjs1 | 2 days ago

Genetic Testing appears to be so important for Intermediate Dry AMD but retina physicians don’t seem to care. Ask your retina doctor if they are familiar with genetic testing for your eye condition and if you can get an order for the test offered by
ArcticDx - Macula Risk PGx. This company has an AMD genetics test that will show the eye alleles that respond poorly to high zinc formulations in certain AREDS2 brands. The finding is that 15 percent of the intermediate dry AMD patients should not be taking take a high zinc AREDS2. brand. Ask your physician why genetic testing is not the norm. Beta carotene was a problem why is a high concentration of zinc in the formula when 15 percent of the AMD population should not be taking such a dose.

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1 reply
sjs1 | @sjs1 | 2 days ago

Yes, zinc is an essential mineral for overall health, including immune function and wound healing. However, the controversy around CFH Y402H homozygous individuals and zinc supplementation in AREDS2 stems from studies suggesting that high zinc (80 mg) might not be beneficial for people with this genetic risk factor for AMD.

Do You Need Some Zinc?
Yes, but likely in lower amounts than the standard 80 mg used in original AREDS and some AREDS2 formulations.

Answer asking chatGPT what low zinc brand AREDS I should take given my genetics.

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sjs1 | @sjs1 | 2 days ago

Supplements -besides AREDS2 which was the big study -other studies show supplements that may be effective in delaying progression of the disease, ask your doctor.

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sjs1 | @sjs1 | 2 days ago

There are other supplements thst hae been studied that help prevent AMD from progressing- Melatonin
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