Genetic test

[Cinderella]

Hi, does anyone have experience of getting a private genetic test done in the UK - the mnda has suggested

DNA Genetic Testing For Health, Ancestry And More - 23andMe United Kingdom

But when I looked up what it tests for it doesn't include mnd.

Has anyone tried this company or know of another that will test for the necessary gene issues?

Thanks

[AngieCanuck]

There is a database called Promethease. You can take the raw dna data from an ancestry dna test and input it into Promethease. It scans every published paper that has been published for sequences that are associated with various things (both positive and negative). It’s very science heavy and also unfiltered so could be upsetting or confusing.
Don’t UK MND clinics offer genetic testing/counselling? I guess that’s one thing that the Canadian neurologists do…?

[JamesW]

Hi, I have been through the genetic testing process and also the national 100,000 Genome project (my mum died of Bulbar MND back in 2010). However this was organised through the NHS and I don’t have any experience of doing this privately ……but if I can help please ask.

James x

[Cinderella]

Thanks AngieCanuck I have had my dna tested by Ancestry a couple of years ago from curiosity about origins, is this the same and can I share the results to Promethease for further info? Sounds brilliant if so.

Yes we are supposed to be able to get genetic testing but after 70 days and counting and still no response from the neuro, getting pretty fed up and that is only to see if I can get it (as you have to make your case for it), not an appointment to get it done. I am spitting feathers as the saying goes and ready to make a song and dance about it, there are four new trials open in the UK but you have to know what gene issue you have first!

Thanks JamesW There is a blog on the mnda website - revisited: should routine genetic testing be considered for all cases of MND? From the amount I have listened to so far, the case is there for anyone with mnd to get tested if they want to as the stats they are using currently do not reflect the true picture.

Onwards and upwards as they say, but I am tired of fighting for every little thing.