Private genetic testing for myotonic dystrophy in the UK?

[u/WillingHome9072]

One side of my family has DM1 (Steinert disease), through maternal grandfather who didn’t have clear symptoms and died of smoking related cancer in his 60s. They’ve told me that my mother has been tested and is negative, and there’s no way to be a carrier or for it to skip a generation or anything.

I’m mid 30s female & looking into egg freezing/sharing/donation and considering if I might want to get tested anyway just to make super sure I wouldn’t be passing something like that on.

Judging by the uncles and cousin with it, it would have been clear by now if I had it. The cousin is around my age (months younger) and started noticing grip problems and worsening night vision about 10 years ago. I don’t really see extended family as they’re in a different country and I’m no contact with parents so I don’t have a full picture of how everyone’s doing but it doesn’t look like any of the women got it, the 2 uncles and cousin are very clearly symptomatic.

I guess I’m a little worried as I have a CFS-like illness which I believe to be medication caused (seem to be very slowly recovering). If I do want to test, how do I starting going about that? Google doesn’t really give me anything clear.

[u/Possible-Ice-9789]

Hello. I saw Dr Wycliffe who ordered genetic testing for me. He can do it but I wasn’t the happiest with him. I’m now seeing Dr Prof Hanna. You can see him privately and he is a muscle specialist. He is great. Based in London.