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SN undiagnosed genetic conditions

This forum is for Mumsnetters to discuss undiagnosed illness.

Accepting you may never get diagnosed?

0 replies

TigerRag · 30/05/2022 18:17

short version:
Diagnosed with tunnel vision at 3, diagnosis chnaged at 4 and was told it was Nystgamus and I'd never be able to drive.

Aged 15/16 I started losing my colour vision (this is rare in women) and developed chronic light sensitivity.

Aged 21, diagnosed with optic atrophy

Aged 26/27 told by different consultant it's not optic atrophy but he has no idea what it could be

I'm now 33. I've had so many tests done and no one has any idea what's going on. All anyone can now tell me is that my pupils are a slightly different size and nothing more.

I'm actually quite concerned about this. There's a fear from me that I may one day lose the vision I have. It's changed a lot over the years. (although, there's no accurate way of testing with Nystgamus because my eyes constantly shake)

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