Genetic diagnosis : Hi all, sorry I haven't posted... - Ataxia UK

Ataxia UK

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Genetic diagnosis

ww-wibblywobbly profile image
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Hi all, sorry I haven't posted anything for ages but sometimes life is like that. I have finally got some sort of diagnosis. I had more genetic testing a couple of years ago and they have found that I have two anomalies on gene SPG7. This means that my disability is more spastic based than ataxia. I don't yet know if I have the complex or simple version - obviously hoping it's the simple one as there's a lot less other medical problems with it. Anyway now I'm not sure if this is the correct forum for me or not? Has anyone else been diagnosed with a spascisity illness?

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ww-wibblywobbly
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wobblybee profile image
wobblybee

Hi🙂 A friend locally (UK) has a diagnosis of SPG7.

She would like contact if you are interested.

There is an SPG7 Support Group on Facebook.

ww-wibblywobbly profile image
ww-wibblywobbly in reply to wobblybee

Hi, yes that would be great 👍. I'll message you privately xx

Cuds profile image
Cuds

Hi It's good to hear that you are getting closer to a firm diagnosis and I hope this means that you may be able to access some treatments for your symptoms now. Many of the ataxias have spasticity as part of their symptoms so if you find the forum useful then I don't see why you should leave it. I think Ataxians are a welcoming bunch of people and would have no objections to you staying in the forum of it helps you.... Bon courage!

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