Early Macular Degeneration - Any Advice?

LouLou

I'm not asking for a diagnosis, just wondering if there's anywhere I can get guidance.

A week ago I visited my (high street) opticians for my two-yearly sight test (I've been short-sighted since I was about 14, I'm 49 now). My prescription has changed (close up sight is getting worse) and I said breezily, "I'm still reasonably young and healthy so I won't bother with the £10 3D scan" (the other option is a free "flat" NHS scan of your eyes - I opted for that).

Got my eyes tested, and the eye examination was reaching its conclusion, then the optician said, "Have you heard of macular degeneration?" - I have, but I didn't know what it meant. Apparently I have the early stages in my right eye.

She told me to go back and take the 3D scan, which I did. "If I phone back", she said, "then you should worry". (She didn't, thankfully - so I wondered in the intervening days if she'd misdiagnosed it - denial, I suppose).

It's normally in "very elderly patients", she said, and asked if I smoked (no), or had lived in a hot country for years (I'm Scottish so my skin is practically blue, as Billy Connolly says!!)  Then, "Can you see the doorway in straight lines or wavy lines?" - I laughed, because I thought, she's telling me I have really old eyes and my eyesight's getting worse.

Then I get home and do a search term (as I had no real idea what she was telling me) and felt sick!! It's progressive, incurable and can cause sight loss.

I phoned the optician myself a few days ago, to try and get some reassurance. Yes, it's still the same diagnosis after looking at the 3D scan, she can't advise how quickly it will progress and to get back in touch if I get distorted vision.
I understand doctors don't have all the answers but I feel left hanging. No idea what lies ahead, no idea what I can do to try and slow its progression (no idea if you can "halt" it!) and she still recommended seeing an optician every two years - which seems a bit strange, given such news.

She did say she couldn't see my history (it's the same chain of opticians, but a different branch - I actually thought their records were centralised via a computer screen). I may have had it for years (?) and at my age it's quite unusual, she even said "there's nothing to worry about".

I phoned the opticians at my location (who I've seen for around 12 years) but they said the 3D scan I had recently is quite new to their stores  - nothing unusual in my notes from two years ago, but "something" in my right eye, could be diet, but not really worthy of concern.

Now I've read all sorts of conflicting things online (and, yes, I know, Dr Google is never a good idea). Should I speak to my GP? (Some seem to think it can be a sign of other health issues, or even genetic, especially if the person is quite young). Supplements? Lifestyle? (I'd say my diet isn't the greatest but I rarely drink, my main health problem is insomnia/anxiety/mood - which I've been medicated for for years).

Any thoughts on this would be appreciated.

[Deleted User]

I am sorry that I cannot give you authoritative advice, but two thoughts pop in my mind:

1) Yes, if you don't know where to start, speak to your GP; what have you got to lose?

2) It is scientifically proven that Lutein and Zeaxanthin help with macular degeneration. You can take supplements or there is plenty of lutein in eggs and spinach:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4176961/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4359817/

https://pubmed.ncbi.nlm.nih.gov/23360692/

(I've got the full text for the 3rd study. I can send it to you by PM for copyright reasons)

olgadapolga

Being as the optician was do vague about it, I think that I would be having a discussion with my GP about it.  

Arthurian

I would go to another optician and get a second opinion.  A friend of mine was told he had macular degeneration,was worried sick for weeks thinking he's going blind, went to see a specialist who told him, "I don't know what that other chap was talking about,there's nothing wrong here."

Torry_Quine

I would have thought the optician should have referred you to the eye department in hospital if they suspect  macular degeneration. I definitely think you need to speak to your GP. 

LouLou

Thanks everyone. I think GP/a second opinion is the way to go. I must admit I did freak out when I started reading about it. There are a lot of eye care supplements (for macular degeneration) on the market and they can be pricey! In fact, there's so many I wouldn't know where to start).

I did mention about referral or if I needed follow-up treatment but she said "I'd only refer you if you were in your 80s, for example" (?).

theoretica

Talk to your GP receptionist - mine says that they don't do eyes and the optician needs to be the one to do a referral to eye hospital.

Also, explain to the optician exactly how you feel about being left hanging with nothing much more than the scary condition named.

pollypenny

My father and aunt had AMD, as we suspect did their father.  There is a genetic link.  

I am paranoid about getting it as I couldn't live without reading.  

I take Macushield, a lutein supplement daily.  I also eat lots of colourful vegetables and eggs, nature's sunglasses, apparently. 

On the positive side, older generations did not have the advantage of good eye protection, especially lens which darken in almost any sunlight. 

My optometrist has put me on annual checks and he is very optimistic about the prospects of treatment by the time I need it, if at all. 

Go back and ask questions, including a referral to a consultant if it would reassure you.  

LouLou

Forgot to mention, but when I phoned the optician (to ask about the 3D scan/more information), we talked about the fact she couldn't see my entire history (think she can view notes from my usual branch, but not their scan images).

I saw the same optician/same location (not the one I've seen for years) in November briefly. I wanted my eye test a few months earlier because my close-up eyesight frustrates me so much (the varifocals I wear sit on my head, for example, when looking at my phone, as it's too blurry!). Back then I did the free NHS "flat" scan with an assistant, then went into the room to see the optician for my eye test. The optometrist said I wasn't yet eligible for my free twice-yearly test yet, to come back in March-April. She said the NHS weren't previously strict about timelines but rules had changed.

In our recent phone conversation, she said she'd compared November's "flat" scan and there were no changes from then till now (approx five months). No idea if she looked at it back in November.

Not related to macular degeneration, but as I like big, kitsch frames, she told me larger lenses are no good for (my current) varifocals, as you need to lean your head right back to see close-up items. You'd think I'd have been told that when I was selecting my first varifocal frames two years ago! This time, I went for varifocal lenses again, but with a smaller frame/lens size.

Obviously as it's the Easter holiday, I'll wait till Tuesday till I talk to my GP, hopefully I can get a clearer picture (pardon the pun).

sue1976

My dad and grandad both had Macular degeneration. One of them had the ‘wet’ version and the other the ‘dry’ version’. As a result of this they monitor my eyes for this condition.

belfastgirl23

That’s a really unhelpful way to be left, I would be asking some questions at a higher level in the optician chain or at least asking to see your usual optician for free for reassurance. I would feel similarly stressed about it.

I also have a history of MD in my family. The advice about wearing good quality sunglasses, eating leafy veg and taking ideally a specialist supplement but if not at least some fish oil is spot on as far as I know. I would also ask for a referral to an eye specialist or to be honest would pay to see one privately even just as a way to reassure myself. 

Also just to add that an optician once said something identical to me (right down to me being very young for it!), when I was referred to an eye specialist they said there was nothing there. 

And there is the Macular Society as well for more info.