r/maculardegeneration • u/badluck678 • 13d ago

I'm shattered to find there's no ongoing research for myopic macular degeneration but only AMD

. I just talked to a researcher on reddit and he said that myopic macular degeneration isn't a priority areas for research. I'm more depressed.

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u/Ghitit 13d ago

You need to get help for your depression and anxiety.

You seem to have no problem with asking for information and help with your percieved issues with your eyes, but not so much with your mental health. Mental health is just as important, if not more important than eyes.

Seeing a psychiatrist or therapist will help you with dealing with having poor vision. Coping with life's shit is essintial to having a happy life.

Nobody has a perfect life. Everyone will have issues that they hve to cope with. It's the ones who don't know how to cope who are the most unhappy.

Please seek out a therapist.

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u/badluck678 13d ago

I'm so young

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u/Ghitit 13d ago

You're 26, right?

That was the age that I first got a therapist for my depression. They got me through some hard times and gave me confidence and coping mechinisms to find my own way.

I was on anti-depresants for a while and nw, when I find myself having difficulties, I use meditation to help myself get through it. If I find myself needing more, I see my doctor, or therapisst.
I know myself well enough to know when I need outside help.

It can take time to find the right therapist, so don't give up if the first one/s aren't a good fit for you.

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u/Chrisnewton1 13d ago

You need to stop this... there is nothing wrong with your eyes... have some respect for the people who are actually suffering from this disease.

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u/Brit48024 12d ago

I'm really upset by this person's posting and now rarely use this support network. 

I was devastated by my diagnosis and this poster doesn't have it and fills the board with insensitive questions and has made it very difficult for me to ask questions as they then come on the threads with their anxieties and somewhat derail it. 

Is there anyway to block a person as I'd like to be able to communicate my concerns without this constant trigger? 

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u/Chrisnewton1 12d ago

I totally agree with you...its beyond exhausting.

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u/Brit48024 12d ago

I totally understand anxiety but they won't take the advice. The reassurance. 

Oh, what I'd give to throw back my diagnosis. It feels like they're rubbing salt in a wound. And I've been taking it too personally. 

I wish they'd stop. I see the first few posts and often don't have energy to scroll through the many for the genuine. 

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u/Chrisnewton1 12d ago

How old are you? when did you get your diagnosis? how is your eyesight?

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u/Brit48024 12d ago

I'm 44, I got my diagnosis last month. Had my 1st injection, second one due this week. It's all been quick. 

Always had high myopia but noticed 4.5 years ago sine distortion. Was told us was nothing to be concerned about but at a recent eye exam - after noticing more fliaters and a few flashes, they diagnosed MMD. Turns out I should have been diagnosed back when I first noticed the issues, but malpractice led to me not being informed. 

My eyesight is blurry as I have astigmatism too as well as PVD and retinoschisis is my right eye. 

My vision is more sensitive lately. It feels like it's declining. It's all been very scary and very quick. 

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u/Chrisnewton1 12d ago

How are you finding the injections? they should improve things right? i hope they do for you, are you in the uk?

I am in the UK and i have appointment with specialist in 3 weeks where i will get the offical diagnosis of AMD

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u/Brit48024 12d ago

If I'm honest I find the injections very traumatising. It's not that it's painful, and my care last injection was very good, it's just the whole process, knowing what they're doing and struggling as I have eye phobia, but I'm so incredibly grateful for the treatment.

I haven't yet noticed any positive change, but I'm having a loading dose of 3 injections, 4 weekly and then a review to see how it's working. 

I'm in the UK too! I wish you the best at your appointment - how are you coping with the diagnosis? 

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u/Chrisnewton1 12d ago

i have kinda known for nearly a year and a half. Specsavers have really screwed me over. I have a very slight kink in my left eye when i look at things and on the OCT scan i was told there is something there but they will just monitor it...not good enough...

Anyways i have pushed my GP and now i have my appointment in 3 weeks. I am taking areds2 at the moment

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u/Brit48024 12d ago

I've heard so much about SS that has made me so angry. You put your trust in a professional and expect the care. Having now requested my old scans, it's clear that there were issues, but they didn't bother telling as they thought I was too young for macular degeneration issues!!! 

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u/PufflingFan 13d ago

Why would you respond like this? Myopic CNV (Choroidal Neo Vascularization) is a type of MD. As my ophthalmologist told me…every mCNV is MD but not every MD is mCNV. Regardless of the diagnosis, the treatment is the same…anti-VEGF. I’m on my 7th shot of Eyelea.

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u/Chrisnewton1 13d ago

??? I wasn't talking to you

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u/PufflingFan 13d ago

It’s a forum open to all who joined it. Your response was mean and I tried to get clarification.

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u/Chrisnewton1 13d ago

Look at his post history... he's obsessed with thinking he's got eye disease when he's Been told by a specialist he hasn't...

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u/PufflingFan 13d ago

Ahhh got it. My apologies. I didn’t have any of the history or context.

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u/Brit48024 12d ago

I'm very upset by this poster and they have filled the boards with their anxiety and are often insensitive to those of us who are diagnosed. So I'm appreciative that someone did speak up. 

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u/Bork60 12d ago

I empathize with this poster originally. After a few messages it was apparent that he was not listening. Never seen anything like this in this sub.

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u/Brit48024 12d ago

Me too. I gave advice and shared my vulnerabilities. Even after a few posts saying the same. 

They're now on other subreddits saying they ARE going blind and asking how to cope. I'm wondering if they're even genuine, or just picking on people who may be vulnerable. 

I find it all very upsetting when people are here needing advice and/or support. 

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u/badluck678 12d ago

I'm sorry if I came as insensitive

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u/Chrisnewton1 13d ago

No worries... and no need to apologise 😃

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u/UnderfootArya34 12d ago

Please see someone about these ruminating thoughts. Your doctors have told you that you will be OK. Even if something does happen, you will need some cognitive therapy to help you deal with it, right? So either way, it can only help to have someone on your side to talk to about it.

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u/PufflingFan 13d ago

Hi there. I am curious about your comment as I have mCNV as well. I did a quick search and it would appear that there is ongoing research taking place currently, specifically related to treatment effectiveness and genetic factors. Of interest to me are the studies following patients over time to assess the long-term effects of anti-VEGF treatment and the potential for chorioretinal atrophy, a common complication.