Ataxia UK
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Hi to you all. I am so confused I have recently just come out of hospital and diagnosed with ataxia. I was told it probably happens due to a reaction to anti viral meds. I thought ataxia was a group of symptoms bit reading here it sounds like it's an illness. I'm confused have I had a reaction or have I got something that's going to stay with me? I have already had a brain haemorrhage and losed my right side I do not want to loose my left or have another episode like I just had . Please can some one explain. Sorry for being such a drama queen but I truly am scared thank you x

3 Replies

Hi Denny1

Thanks for your post. I understand your confusion and you are certainly not a drama queen.

The word 'ataxia' is greek and literally means lack of order. Somebody with ataxia has difficulty with balance and co-ordination. It is caused by damage to a part of the brain called the cerebellum which is at the back of the brain and can be thought of as the body's 'balance box'. Ataxia is a symptom of many different disorders/conditions but confusingly there is also a group of disorders called the Ataxias of which ataxia is the main symptom and where the ataxia often progresses.

One of the many causes of ataxia is drug-induced. In your case it sounds like the antiviral medication (the drug) has caused/induced damage to the cerebellum at the back of your brain. Drug-induced ataxia is usually temporary so when the drug is stopped the ataxia will not get any worse and will hopefully get better.

I hope this helps.

Best wishes



Hi Harriet

Thank you so much for replying and yes I understand more now.what you say makes sense and I'm so glad to hear the words will get better. Many thanks x

1 like

HI Denny, I came out of hospital "significantly ataxic" after four days in intensive care during which they tried out several anti-psychotic/epileptic drugs on me. I never received an explanation or a breakdown of the drugs they gave me and would probably not have understood anyway due to extreme psychosis and hallucinations upon transfer to the neuro ward.

The result Is that now I have "acquired " ataxia which has many of the symptoms of genetic ataxia but probably doesn't have the progression.

I don't think I'll ever walk in a straight line again, but hopefully I will still be walking in 20 years time. My only progression so far after 2 1/2 years has been a deterioration in my balance in the dark.

Hope this helps,



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