Should I ask for referral to our University Hospital ?

[David_Wales]

I am 56 and was diagnosed with dry AMD in both eyes and wet AMD in left eye. Seems I am very young to have this -

Should I be referred to our University Hospital, as I have read in the Macular Society leaflet "MD in Working Age" that this may be helpful?

I was investigated by an Ophthalmology eye specialist Consultant with specialist equipment at our local Primary Care Hospital, but as they only talked about AMD and not Sorsby's or any other possibilities I am not sure how specialist they are.

I have requested detailed information by email a week ago about the possible number of years of years of progression of the condition for my age diagnosis, how many years to "Stop Driving", how many years to "Full Grey-Out of Central Vision" etc., but have yet to receive a reply.

info on my hospital:

<<Ysbyty Cwm Rhondda Hospital is a new 108-bed Community Hospital with an integrated Primary Care Centre. It includes four 27-bed Rehabilitation Wards plus Minor Injuries, Radiology, Pharmacy,Therapies and Outpatient Departments and an integrated Primary Care Centre which provides facilities for general consulting and the Out of Hours Service>>

Would be grateful for a reply as I am suffering significant anxiety as a result of the diagnosis and the provision of this information will help me to plan whether I should retire early or not.

Thanks in advance

David

[AlinaL]

Hi David,

Sorry to hear about your diagnosis. I had wet MD in my right eye at the age of 45 and I found the diagnosis very upsetting. So I understand your anxiety.

My understanding of dry MD is that it progresses slower than wet MD. As wet MD is caused by a bleed the progression to complete loss of Central vision can be swift. I first noticed a problem with my eyesight in mid Nov and by end Feb when I got my first injection I had lost my central vision. I'm pleased to say that I had 3 injections which stopped the bleed and restored my vision. I know that I am an exception to the rule hear, as the injections don't always work.

So my advice would be to press to see a consultant as soon as possible, time can be critical with wet MD, I left mine too long and can only be very grateful that the problem was reversed.

As for how long you'll be able to drive etc, there are no hard and fast rules. Everyone is different and so the profession if the MD I'd different.

It's very easy to say, but try not to get yourself too stressed about it. Get an appointment with a consultant ASAP. Just prepare for the worst and hope for the best.

I found talking to a counsellor really helped me come to terms with my diagnosis and what I found myself most upset about was not getting help quickly, so be kind to yourself and give yourself the best possibility of a good outcome.

The MD helpline is really good and help me when I didn't know where to go to for advice. Give them a call

Best wishes

[AlinaL]

Sorry there are a couple of typos above... Flipping iPad ... It should say ' and also us the progression' not profession! And here not hear!

[David_Wales]

Thanks for your reply, Alina. I have realised I left out from my question that I have been seen by a Consultant, but am not sure about asking for referral to the University Hospital.

I have updated my question now, thanks

[David_Wales]

Thanks AlinaL, I had my second opinion for the University Hospital, Cardiff, and was confirmed with the dry AMD in left eye. As there was no significant change to the "water in the drusen piles" and it was not leaking, I just have to watch out for sudden changes in vision, flashing lights and bent lines.

[gillmoseley]

Hi David - I thoroughly endorse Alina's advice about the MD Helpline (0300 3030 111).

Did your consultant talk about the possibilities of Lucentis or Eyelea injections? This is now the standard treatment for Wet AMD.

56 years is early but not so unusual for the development of AMD. Mine started to develop at about that age but is only in one eye and is wet. I have been having Lucentis injections since late 2007 and my vision has stabilised although I still have a slight impairment in that one eye. Very important to have treatment as soon as possible if your vision is within the NICE guidelines for treatment.

The Macular Society has a network of support groups throughout the country but they usually meet during the day since most members are retired. There are working age groups as well. You can find out more by going to the Macular Society website. macularsociety.org.

All the Best - there is a lot of help and support available. Don't be afraid to make use of it. Gill