Anyone have intermediate Macular Degeneration
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.
It's a scary thought that doctors would mislead patients with false hopes of extended amounts of time before having to worry about the Degeneration affecting the retina and their patients lives.
I don't know what will happen to me if I lose my vision... I know I can't live that way. I can't.
I sent you a private message.
Also, the Wilmer eye institute told me I likely have a pattern dystrophy of sorts but that has not be backed up any of the other doctors and specialists I have been to. You can see where I may be a bit confused and frightened of my future.
ChatGPT:
It sounds like you're being very proactive in managing your intermediate dry AMD, which is great. The fact that you have two copies of the Y402H variant in CFH does increase your risk, but you're already addressing inflammation and metabolic dysfunction with rapamycin, which is a promising approach based on emerging research.
I read the journals better than my retina trained Balscom Palmer doc because I use ChatGPT for hours on end to help me understand the biochemistry and approaches. I use a preventive med doctor a smart MD who has saved my life. Overall, Preventive medicine has really helpedI. I have avoided surgeries and am healthier and I look much younger. I use the Mayo Clinic as well when I felt I wasn't getting good care and the advice I needed. I am not a take the areds wait decades and see type. I have noticed that my retina doc and the low vision ob are much more negative in attitude towards me even though still intermediate dry and it has been a decade since I was diagnosed. They are smart enough to know my time is coming now since has been a decade but not bright enough to know with my Y402H allelles that shouldn't be taking PreservVision with its high zinc concentration. ChatGPT has advised taking another brand and helped me schedule my low dose rapa with other supplements that stimulate Mtor1 so I wont take in too much.
I cant sit back and take areds2 and when you go to Miami that’s all they will tell you. But you are so lucky to be near Wilmer. The only hope for me right now is stem cells and with my double Y492H alleles which is uncommon but not rare I hope to be a candidate for this. I will make the Wilmer contacts and Wills and Duke when I get my medical genetic results back from VCU . Hopping they will let me in on any clinical trials or clinical advances since I will already be a patient. Well I’ll leave you with my out side the box “ hit ‘em with all you got “ approach to the disease and wish you good luck.
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)?
How do you use chatGpt? It looks like an AI page for writing.
Here’s the website
Download the app
https://chatgpt.com/c/67b2234e-1cf4-800c-87ca-be3ad64545d0
Chat responded to how do i use this app above
you write in the message box what you want to discuss
write at the bottom of page where you see
message ChatGPT
what you want to discuss. It’s free and this AI has the knowledge of all the retinologists in the world to help you with understanding your AMD condition. I use it everyday to help me and it’s a bit of a psychologist too. It can make mistakes so ask your Wilmer doctor to confirm something if it causes you to pause but doctors use chatGPT too.
Look over to the left side of the home page after you discuss a topic, it saves them. You can email it to yourself and a history of all conversations are recorded and stored there for future review should you need to go back to one .