Seems i am always here asking questions & ... - Macular Society

Macular Society

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Seems i am always here asking questions & here i go again.

cormorin profile image
cormorin

Are there other areas that do not have Emergency Eye clinics for AMD?

Other areas seem to have this coverage but our part of Essex does not.

This being the reason i have waited for my appointment today.

Just wondering?

16 Replies

I'm not clear what you mean by "Emergency" in this context. The Morecambe Bay Health Trust does have a dedicated AMD referral system. Optometrists refer direct to the Macular Centre, not via the GP or generalist Ophthalmology.

Hello,

Found out a bit more during my appointment. There is a way to get Emergency Eye treatment here. At the Clinic i was given phone numbers to reach them now i am 'in the system'. So relief that far.

As far as treatment goes i cannot have treatment yet as i do not meet the criteria laid down by NICE!!

In a month at my next appointment i may. Remains to be seen so just have to put up with worsening sight until then.

One good thing is that Mr Patel is trying to start a new trial run by himself & i can go on that. If it doesnt work for me it may help someone else so will be a good thing to be involved in. I think i had expected the worst yesterday & was not expecting to be 'let off a bit lightly'.

Also being told that dry amd can cause some of my symptoms was upsetting as i not been told that in the 5 years i have had dry. Did not think dry moved so fast either.

Eternal profile image
Eternal in reply to cormorin

I have had the dry macular in my right eye for 6 years and it has not got any worse. I just attend my optician every twelve months and if i see any changes i go back to them. There is nothing they can do for dry type. My vision is good but i find reading difficult in badly lit places need lots of light. I have just bought large well covered prescription sunglasses for my holidays.

There are lots of ways to try to help ourselves & now this hiccup with the wet amd is what has thrown me.

If it is the wet that is causing the symptoms at least there is the knowledge that I will get Lucentis eventually & that may help.

Yesterday was a bit of a blow as i had never been told that dry amd has these symptoms too

so will just wait & see.

So good to have so many nice people in the same boat as me to chat to, dont feel so very alone as i did at first.

jayne1234 profile image
jayne1234Macular Society in reply to cormorin

The criteria for treatment of early wet MD is unfortunate. I would urge you to keep a carefull lookout for more deterioration and not to delay going through the emergency pathway if you think your sight is deteriorating before your next appointment. Phone us again if in doubt.

cormorin profile image
cormorin in reply to jayne1234

Hello jayne,

I will be ringing the emergency if it gets even a little worse as i am not prepared to risk what sight i have left.

I have i dark grey patch in my central vision which Mr Patel said could be dry amd.

What worries me is that this appeared at the same time as wavy lines seeming to cause them. Not being able to ask too many questions is always frustrating so am no nearer knowing if this is the dry which means i am losing vision in that eye rather fast. I had been told that would be a gradual thing over time & that wet moved fast so now am just as confused as i was at first.

I am still trying to read with my white light lamp a big help & will not give up yet.

jayne1234 profile image
jayne1234Macular Society in reply to cormorin

I can't comment on exactly what is going on in your eye, but a dark patch in the middle of your eye is indicative of dry MD. It does deteriorate slowly but you may have had it for some time and many people do not notice the first eye deteriorating at all as the better eye takes over automatically. Dry MD can turn wet and this may have happend in your case. Please note that Macular Disease does NOT lead to blindness. It is hard and reading becomes tricky - but you always keep your peripheral vision and can usually get around quite well. A good magnifier may help along with your lamp - but please ask us where to obtain these - buying them from the High St is not a good idea. Call us again if you just want to chat about all your worries - thats what we are here for.

cormorin profile image
cormorin in reply to jayne1234

Hadnt noticed this dark patch before & it is in what i had considered my 'good' eye. Vision is dodgy in my other (left) eye but may still have been compensating as you say.

The dark patch does seem to be getting worse, bigger, every day. Having no one else around that has the condition makes it very hard to understand & i do tend to have periods of 'oh poor me' & panics.

Eventually i will have to get a magnifier & have been wondering about a battery operated portable one, if such a thing exists.

I process donated books in a Charity shop, have for 20 years & do not want to give up my 2 - 3 days a week. So any ideas to help there would be appreciated.

If i find i am getting scratchy again i will call again as talking to someone who understands really helps, thank you.

andy1955 profile image
andy1955Macular Society in reply to cormorin

If you ask your GP to refer you to a 'Low vision Clinic' they should be able to supply you with a good magnifier free of charge on the NHS.

Alternatively you could go to a 'resource centre' which can sell you one which you can try out before purchasing. Resource centres are usually run by local societies for the visually impaired.

You mentioned Essex in previous posts, so you should call Essex blind Charity who have a few centres across Essex. Their phone number is 0870 240 5418.

The danger with 'going it alone' and buying unseen from a specialist retailer is that you may buy something unsuitable. Please call our helpline if this is the route you prefer, so that we can signpost you to a suitable supplier.

cormorin profile image
cormorin in reply to andy1955

Thanks, not having a lot of spare cash i will try my GP first but it depends which Locum we get how helpful they are. Really not a lot of faith in our GP system now.

Have tried ringing the Emergency Clinic number then all others i have this morning but no answer & engaged so will try later or tomorrow. How fast does the black spot in dry amd develop? Fast moving symptoms were due to wet amd i was told years ago. Cannnot seem to get an informed answer & this black spot is larger & darker every morning. Getting very worried again.

andy1955 profile image
andy1955Macular Society in reply to cormorin

I am afraid there is not an exact answer to your question as when someone develops wet MD, the detrioration in sight can be very varied. The symptoms you report indicate that a problem has developed. I suggest you call the emergency number that you have been given. Better to err on the cautious side.

cormorin profile image
cormorin in reply to andy1955

Tried before i had to leave today but got no answer from the Emergency number & engaged from Opthamology though tried several times.

Had a good day with my Son, Daughter in law & Grandson so more cheerful now. Think being on my own i dwell on it too much.

Will try ringing all Essex County numbers tomorrow until someone answers.

Thanks for advice, really appreciate you all!

cormorin profile image
cormorin in reply to andy1955

Another day another load of phone calls.

No reply still from Emergency Clinic but got through to Eye Clinic who are requesting my notes then asking Mr Patel if he will see me before a month is up.

So back to 'wait & see'.

hi I find your chat helpful as I am worried about these symptoms u r going thru

hope u r ok

Hi

Have had a better result than i had been expecting in the last few months.

At first there was only a small change after the first couple of injections but since then have had very good results.

I can now see almost as well as i did before the wet amd started. Still have the black spot in bad lights but mostly in good light it is just a bit blurry.

Very grateful for everyones help from all on this forum, Macular Society who have been great & my Consultant & his team who have really helped a lot & helped me get where i am now.

It has been dry for 2 months now & i am hoping this will continue. Will see what happens tomorrow at my next appointment. Keeping my fingers crossed.

Regards

Cormorin

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