Degenration to Dystrophy

3 yrs ago my consultant told me i have dry AM Degeneration on my 3 rd app they told me it was changing to wet they see me on 3 monthly regular intervals showing me the screen & the changes explaining everything to me.After about a yr they said there was little change continued my regular apps for about another yr,Then i see a Locum who told me i had Adult Macular Dystrophy had a couple of 3 monthly apps no change although i have told them i get a big yellow light when i blink at times or that i have started getting a little flashing spot when i get up to go to the loo in the dark at night & when i awake in the mornings she told me its a floater & now they dont want to see me for 6 months i am a bit worried about this in case the deteriorate,can anyone explain how or why they would have changed my diagnosis from degeneration to dystrophy (it was only the Locum that said it was dystrophy )

7 Replies

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  • Hello Nannymo,

    I think that you should get a better diagnosis from a consultant ophthalmologist who specialises in macular dystrophies. There are many different types and each has a different name, it is important that you know what your condition is called.

    You may find it helpful calling the Macular Society helpline for a chat; we can provide you with the names of appropriate local consultants that you could ask to see. Tel 0300 30 30 111 (9.00am to 5.00pm Monday to Friday).

    Best wishes

    Helpline

    Macular Society

  • As I understand, macular degeneration, when it occurs in older people (50+ but more usually starting in 60s or 70s) it is called Age Related MD (AMD). Never heard of 'Adult' being an associated word. It can be called 'early onset' if discovered in middle age.

    Dystrophy is the term applied to macular conditions which are found in younger people. 'Juvenile dystrophies' as they are called (whatever age the patient!), cover conditions such as Best's Disease and Stargardt's syndrome. They have a genetic cause but are sometimes only discovered later in life. For more information go to the Macular Society website macularsociety.org.

    How old are you? (Not out of curiosity - just to align your age with the usual diagnosis pattern?!!!)

    I see there is another post from the Macular Society, suggesting the helpline. This is to be highly recommended. I work as a volunteer for this organisation.

    Best Wishes!

  • Thankyou both so much i was diagnosed age 62 i am now 65 the explantion the locum told me after i questioned her to whty the change was that Dystrophy is & the one or other of my parents must have had it but sadly my dad died at the age of 61 as did my 2 elder brothers my mum died at 73 but was never diagnosed with it only cataracts & my older brother who is 75 has never had any problems with his eyes.,anyway i will get in touch with the Macular Society & see what information they can give me thankyou both once again

  • Good luck! There is a lot of practical help and support around if you need it and know where to look and the Macular Society Helpline will be able to point you in the right direction. Out of curiosity, did your locum say which dystrophy it was? There is a list on the Macular Society website.

    All the Best!

  • She told me it was adult macular dystrophy & thankyou

  • For me, 'adult macular dystrophy' is not sufficient information. It could cover a number of conditions. If you are interested in knowing more about the condition, Google will throw up some facts and there is a leaflet about juvenile dystrophies (downloadable free) from the Macular Society website). Whatever you decide to do, I should definitely ask for more information about the condition and about any treatments available from your consultant ophthalmologist. Not many of these juvenile dystrophies are suitable for treatment at the moment, so I don't want to raise your hopes, but if I were in your place, I would want to find out.

    All the Best!

  • My Doc told me that those flashing lights are a kind of optical migraine and its part of the 'bargain' of having AMD (Age-related Macular Degeneration) not floaters.

    ... If I were you I would seek a second opinion..just my opinion

    hope this helps

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