Possible retinitis pigmentosa?

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Good morning, 

I am 25 years old and had an eye test the other day. The opticians said that my prescription hasn't changed (quite a weak prescription) since my last eye test 2 years ago, from her checking with the light in the eye and a photo of my retinas she said they are completely clear and healthy however I did poorly on the visual field test, my right eye came out really bad, however, my left was ok. The visual field test was the one where you stare at the red dot and say how many white dots you see. I generally don't have any issues with my peripheral vision and have a quite wide range of vision. As my mother has RP they recommended that I go see a specialist to make sure its nothing serious. 

When I got home I did another visual field test (I know not great) where you stare at a dot and press a button when you see a dot (the one I used to do), I got 99% on that one out of 70 dots on my first go so no problems. I also don't have any issue with my night vision as well.

About 7 years ago I did have genetic tests which were inconclusive and the electricity run through my eyes and they said it was very unlikely that I will get it but I should still get regularly checked. It also runs in my family but only on my mum's side and always within the female line aka my mum and grandmother 

I do have an appointment with a specialist soon but I'm freaking out and getting incredibly anxious because I know how much it ruined my mum's life and me losing the ability to drive or see is career ending. 

I don't expect anyone to diagnose me over the internet but is there anything I've said that could reassure me that I don't have RP?

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  • Posted

    Why don't you go to a different optician & explain what happened at the first one.  Tell them you have been referred to a specialist but are very anxious while you wait.  It could be that the person doing the fields test was inexperienced.

    I had a very poor fields test recently, this was done in a hospital & I know that the Ophthalmologist was very inexperienced & I left, with a follow up appointment for November.  I actually rang the helpline of the RNIB & they told me that if the fields test was inconclusive or whatever, it should have been repeated, which it wasn't. 

    I have an appointment with an optician next week because I have had fields tests done there before, so they have something to compare my latest one with.

    So, do go and repeat your tests with a different optician & if there is a problem, they should be able to refer you to your local hospital.  You could also Google the RNIB & find their helpline number.  They may not be available on a Sunday.

    Good luck

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    • Posted

      I should have gone to my old opticians and asked for a visual field test. 

      I did ring up the RNIB yesterday and they said they have never heard of the one I was talking about and the same goes for another optician I spoke to. I do remember the optician that did my initial visual field test saying people sometimes just do badly on it. I also never have issues with bashing into things or missing things that are out of my field of vision. 

      I think I've just accepted I got to wait, the fact my retinas were completely clear from the photos and scan should be re-assurance enough, hoping it just a precaution thing.

      Thank you for your advice, I'm just such a worrier and always try and get as many opinions as possible.

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  • Posted

    Every optician's practice has a qualified person as manager, perhaps a Dispensing Optician or an Ophthalmic optician, the rest of the staff may have done training but not got a degree, having spent how ever many years they spend, learning their trade.  You should go to another practice & if you can't go to the one where you have been before, then go to a name you know & explain what has happened and ask that the Dispensing Optician does your fields test for you.

    The girl who messed my test up, kept moving the chin rest up, which distracted me, so I kept missing the flashing dots, then she stopped the test & restarted it, which she shouldn't have done

    I'm not surprised you are worried.  You want someone confident looking after you & doing tests correctly.

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