I’m new here.: Hi,I’m new here and have symptoms... - Ataxia UK

Ataxia UK

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I’m new here.

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Hi,I’m new here and have symptoms of ataxia possibly due to gluten as have been coeliac for about ten years and have a gluten free diet.Having problems with balance,dizziness,clumsiness,difficulty finding the right words,problems swallowing and choking at times.Seeing my GP next week and wondering what tests to ask for?I know there is a test for tTG6 which is unavailable on the NHS as yet(I would pay if it was available and affordable privately).I am lower end of “normal “ for vit B12.Have fybromyalgia and Sjögren’s syndrome.IgM is 0.25g/L(low),IgG is 14.6g/L(within range) and IgA is5.93(high).These are results from 2 years ago.I see consultant for coeliac in September.Any advice appreciated.

4 Replies
majajefferies profile image
majajefferies

Hi,

Have you thought of a referral to an ataxia specialist centre (these are listed on Ataxia UK)? They would then be able to refer you to all the specialists under their umbrella, like speech & language, physio, ot, gastric, etc.

I would also probably ask for an assessment with the swallow clinic (dysphagia) if you find you cough when swallowing.

Good luck!

Maja

in reply tomajajefferies

Thank you Maja, I'll look into that.

TedTom profile image
TedTom

Hi, am assuming you are in uk? If so I d say go to see Prof Marius Hadjivassiliou at the Ataxia clinic atthe Royal Hallamshire in Sheffield. His particular research into Ataxia is gluten and is also a lovely man x

in reply toTedTom

Thanks TedTom.I’m in UK(Scotland)so I'll find out if it’s possible to see the Prof.in Sheffield.

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