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Ataxia UK
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in 2012 I had a massive bleed that caused a stroke, last year I was diagnosed with ataxia does it get better or worse,

I cannot use my left side my speech is always slurred more when I am tired I cannot write as I am left handed and cannot hold a pen, and I am now called Churchill the nodding dog as my head shakes.

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Hi xray25 aka Churchill!

Your best information regarding how your situation will progress

will come from your Neurologist. Ataxia varies from person to

person anyway, so only someone with access to your MRIs etc

will be able to give you a better idea long term.

Most of us notice symptoms are worse when we're tired or under

stress, re slurring, mine comes and goes. But it must be particularly

frustrating for you being unable to write. Best wishes xBeryl

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Hi Wobblybee Beryl

Thanks for the reply, I have not seen a neurologist since my last MRI scan from my stroke, it was the stroke doctor that told me, he tried some tablets but as they did not work discharged me, my GP does not no anything about ataxia, I am always tired which is probably why I am always wobbly.x xray25 Vickie

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Dear Vicky, I have ataxia, although not from a stroke (unknown cause). Have you tried physical and/or occupational therapy? I'm sorry, I cannot give you more advice, as I agree with what Beryl said, everyone is different. Thinking of you and hoping things improve! ;o)

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Hi febuary I am having physiotherapy at the minute as I cannot walk far after my stroke it is helping a bit

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Hi Vicky

Thank you for your question.

As I am sure you will of read some of the ataxias are progressive, that is they get worse over time. The underlying cause of these is often genetic or hereditary. However developing ataxia after any 'insult' to the brain, for example a stroke, will not get worse over time. You will have good and bad days and learn what the triggers are that make your ataxia worse eg. tiredness, stress, but it will not gets worse as time goes on.

Best Wishes

Harriet

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Hi Vicky!

I hope your physio sessions are going well, and you soon feel improvement.

It's not uncommon to find GPs know little, if anything, about Ataxia. When

you joined AtaxiaUK, the membership pack probably had a booklet in it for

GPs . I passed mine on to next GP I saw at the practice, as far as I know,

I'm the only patient there with the condition. xB

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Hi B

physio is not to bad, I have had a word with my GP again, she seems to think my stoke consultant is a neurologist it was him that said I have ataxia but he was also useless. She is now sending me to neurology so may get some answers.xV

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Hi V!

Honestly, sometimes it seems like one hand doesn't know what

the other hand is doing!

My GP sent me for NeuroPhysio, I got a basic physio who had

no interest at all in Ataxia and it turned out to be a waste of

everybody's time.

After pursuing the GP I did get a referral to a Vestibular Therapist.

My first appts at Neurology were with someone who had a special

interest in MS, he asked if I would like to be referred to a colleague

who specialised in Ataxia, naturally I said yes!

Ataxia is frustrating enough, it would be a comfort if all professionals

were on the same page!

Stand your (wobbly) ground at the Nuerology appt! xB

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Thanks B you have been a real help, and your right ataxia is so frustrating, I get so mad my left arm and hand have a mind of there own, I do laugh but it is also frustrating x V

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It does! You will conquer your problems one by one, slowly but surely!

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