Dr Brown follow-up to scotoma questions ...

[melinda68]

Dr Brown
Thank you again so much for your input.
I am the person with the scattered scotomas.
You asked a few questions, and the following might give a better idea of where i'm at as far as work-up:

I had the FA during the first acute episode. I have not had one since. Optic neuritis has been ruled out by several doctors, as have the white dot syndromes, MEWDS etc. CSR was never mentioned to me as a possibility.

I believe there is some kind of cumulative damage, as the spots never entirely resolve, but leave scotomas scattered throughout my visual field. I am terrified of waking up one day with a spot right at my point of fixation!

I do suffer from migraine with aura, but these spots occur only in one eye at a time and are nothing like the scintillating scotoma of a migraine. However, some kind of migraine variant HAS been suggested to be my several doctors, as a tentative diagnosis of exclusion.

I was wondering whether my problem could be with the RPE layer or choroid, and might not be visible during a dilated exam?? I guess what i'm trying to establish is whether a serious disease could have been missed or would there be clear clinical signs after 10 years? Can the doctor see the deeper layer of the eyes on dilated exam?

Thanks again
Your valuable time is much appreciated.

[melinda68]

Do you think vaccination could have started this?

[melinda68]

Wow, thank you SO much. That is probably the most 3comprehensive and relevant response I've had from ANY eye MD to date!
I will make a note of what you said about the FA, should I decide to take that route. Perhaps it would be best to have it during an acute episode??

A few weeks, maybe a month or so, before all this started I was travelling to SE Asia and had a series of shots - hep A, thyphoid, diptheria/tetanus etc, all the usual suspects. I was also taking antimalarials. Wonder if that nasty little cocktail was the culprit????

[Sandra M Brown, MD]

Even when MEWDS and AMPPE etc. are in their active stages they can cause very subtle changes to the appearance of the retina.  OCT is no good, it looks for thick and thin which is not the issue.  Since we don't know what triggers these conditions we can't hypothesize rational treatments although people have thrown steroids at them from time to time.  Keeping yourself as healthy as  possible is a great place to be.  Also, really take every measure to avoid catching common colds etc - be a hand sanitizer junky.

As to the FA, it is not going to change where you are now and is not going to confirm once specific "acronym" diagnosis.  It won't really give you any leverage to decrease the likelihood of additional attacks.  So skip it if the idea stresses you out.  If you do get an FA, you need a really top quality FA with a lot of both "early frames" and "late frames" which is the best time to pick up RPE abnormalities.

[melinda68]

Dr Brown
Thanks again. I do believe it is something along the lines of what you are suggesting. It does seem the best "fit" - and the fact most doctors tend to look for horses, not zebras, might help to explain why one of the these rarer conditions has not been pursued. I did move from Australia to the US in the midst of all this, and consequently have not had the ONE eye MD following my case over time.
I was about 30 when all this started, which again fits the profile for these conditions.
They are not "treated" as such, are they, but rather monitored? I was wondering whether there might be any preventative measures I could take to minimize further damage. I do take eye vitamins, don't smoke, do exercise, eat well etc.
I think I will have the FA in the new year. I must admit I am very scared of it showing years' worth of damage "behind the scenes".
Would the OCT not have picked up the same information? Also, could a retinal specialist using scleral depression and actively looking for signs of MEWDS, AMPPE (ie just doing doing a standard dilation) still miss subtle changes????
Sorry for all the questions, but I often drive myself to distraction trying to figure this out.
Thank you!
Melinda

[Sandra M Brown, MD]

The "white dot syndromes" was definitely a good thought.  After 10 years of repeated attacks there surely would be some cumulative evidence.  However it can be very subtle on office examination.  A fluorescein angiogram is the best way to spot patchy, slight disruption of the RPE.  CSR usually persistently affects the same region of the retina (often the macula) so this diagnosis is not a good fit for your symptoms.

If you wanted to pursue one more test, I think the FA would be the best.  Supposing it shows these subtle patchy changes that correlate with your symptoms, then you are probably having an unusual version of retinal epitheliitis (the general term for MEWDS, AMPPE, etc).  Younger females are most prone.  Repeated attacks are common, often triggered by something like a viral cold.  This is definitely a disease where we (docs) don't understand much about what's really happening.