Not AMD at all but scarring from looking at the sun???

[blueholgate]

I am a bit confused. I was diagnosed with AMD, age 55. Since then the ophthalmologist has been doing annual retinal scans and telling me it all looks stable. That was in Germany. Now seven years later I have returned to the UK and finally got a hospital appointment for them to continue the monitoring. To cut a long story short the ophthalmologist at Bournemouth hospital thinks it is not AMD at all but I must have stared at a partial solar eclipse sometime in my youth. And it is unlikely to be AMD because I am too young! I am a bit taken aback by this new diagnosis, good news though it may be. Has anyone heard of such a mis-diagnosis of AMD before?? Any feedback welcome.

[andy1955 Macular Society]

Hi there,

Difficult to comment I am afraid.

On the helpline of the Macular Society we occasionally do come across people who have been misdiagnosed. It is however quite rare.

All I would say is that diagnostic techniques and equipment have come a long way in 7 years so a mistake could have happened, but it is strange that you have been monitored annually so I would have expected the German ophthalmologists to have picked up on it.

Could I ask if you are 55 now, or 55 when you were diagnosed?

If you were 48 when you were first diagnosed, it is very young and unlikely to be 'age related' macular degeneration.

Best wishes

Helpline

Macular Society

[blueholgate in reply to andy1955]

Hello, I was 55 when first diagnosed. The UK ophthalmologist insisted I should be more like 70 to be suffering from AMD and seemed quite firm in her opinion it was not AMD. She spent a few minutes looking at the retinal scan and her first question was had I ever looked at a partial eclipse in my youth. She was prepared to offer another appointment in 6 months time but if that is the same then she will return me to my GP. If she is right that is great. But if she is wrong then I will have AMD with no further monitoring.

Thank you

[Hidden]

Hi, I'm 59 and last year I noticed an abnormality in the vision of my right eye (straight lines appeared to have a fracture). I was sent to an ophthalmologist at a specialist eye hospital in Amsterdam where I live. The doctor sent me for a scan and decided that I have an anomaly on the macular but he said that it wasn't degenerative. He couldn't say what it was though and offered no follow up appointments but said I should monitor it myself using an Amsler grid and to return if I'm concerned.

[Hidden]

HI: I imagine the diagnosis would depend on whether you have a positive history of sun gazing/staring. If you can't recall staring at an eclipse (or any other strong light source for that matter), then it probably isn't caused by light damage and is something else. Either way, the 'not amd' finding is definitely good news.

[BumBumBanks]

I think people need to realise that AMD and other macular disorders take a long time to develop symptoms. I was 26 when scarring on the macular was first detected on both eyes with no other symptoms and was discharged from the eye specialist as no other symptoms were present. Now at 42 I have no central vision in one eye and the other is slowly getting worse so I have regular six month appointments at the eye hospital. I have a form of macular degeneration that affects younger people. What I'm trying to say is that macular degeneration can take a long time form symptoms from first appearing to actual sight loss. Mine took thirteen years so don't assume it's not degenerative just because you have been stable all these years. That said research is coming along with various treatments and wearing sunglasses with total UV block and taking a eye vitamin supplement (which I'm convinced has helped me keep my sight in my good eye), and following a healthy lifestyle can all help to slow the progress of this disease.

[Antonio79 in reply to BumBumBanks]

Hi, what is the name of your condition?

[Sukie1903]

I have recently been diagnosed with wet AMD. My first symptoms were Vertigo, and a feeling that I'd been staring at a bright light and the image was not fading. I sometimes get this with migraine, so that is was I thought it was. It was only when I noticed that it was in one eye only did I rush to have my eyes tested. The point is that the tests I had were very extensive. One was to have a fluorescent dye injected into my arm so that the blood vessels in the eye could be seen. Since wet AMD involves blood vessels encroaching on the macular and leaking, I would have thought that it is difficult to mistake Wet AMD. Before I had dry AMD for some years and had no symptoms!

This does suggest to me that you did have a misdiagnosis.

[goldiewhite]

I was diagnosed with amd recently aged 40 after repeated trips to specsavers over 5 months as struggling to read small print in dim light. I was especially concerned as onset after several episodes of sudden blurred vision in pregnancy for which I attended a&e. Doctors attributed to high blood pressure and increased my drugs (my eyes were never examined). Every time the optician said something different (from just needing new prescription which made sight worse, to something not right with macular but reassured not amd). The 4th time I was told I had dry amd in both eyes but no point referring to consultant as no treatment. This obviously stressed me out. I managed to get referred via gp to local hospital as I had read that if under 50 should not be classified as age related amd and other causes should be looked for. hospital diagnosed me with central serous retinopathy which fits my history (it was an extremely stressful pregnancy and I had steroids as baby born prematurely - all these are risk factors - in hindsight my first episode of blurred vision was after steroid injection). This still worries me as risk of relapse and complications but not as much as amd- and at least I am being followed up and now know to avoid steroids. I am frustrated that diagnosis took so long and feel I wasn't listened to as knew something not right - my blood pressure was not megahigh and I had no other preeclampsia symptoms. The onset of symptoms matched blurred vision in pregnancy and I had had an eye hospital appointment a year previously (for unrelated reasons) with extensive testing and no evidence amd so to have amd symptoms a year later in both eyes felt odd to me. I appreciate this is unusual case but shows misdiagnosis can happen

[Hidden in reply to goldiewhite]

Ok, it sounds as though all previous diagnoses are irrelevant as they came from opticians rather than a retina specialist. If your csr has resolved then it sounds as though you had the acute form, which rarely causes serious long term vision problems. However, it can recur or be complicated, and you check your vision periodically at home, attend annual eye tests, and of course attend any scheduled follow-up with your retina specialist. Also, should you notice any sudden vision changes (such as increased floaters, flashing lights, reduced vision etc) you should get yourself to eye casualty either the same day or the next morning. Aside from this, since csr is often associated with stress (as well as pregnancy), one of the best things you can do is try not to worry about it. Acute csr is a world away from amd and - even if it recurs - is unlikely to cause significant vision loss.

[goldiewhite in reply to Hidden]

Thanks watti - my vision problems are a mild inconvenience only and I am very grateful for that and relieved not amd - that diagnosis caused me lots of stress

[Hidden]

I'm not going to write a long post as most of the points I have are already covered by others. Just for the record I was 34 when diagnosed with amd in my right eye.