Experiences with

Ataxia

No one has ever told us about the ataxia centres, my husband sees a neurologist annually only to monitor him. Should we be asking for a referral to the ataxia centre, what can they do for him.

What I am wondering is whether these feelings are common among persons with Ataxia.

After seeing a neurologist he was diagnosed with idiopathic cerebellar ataxia. I saw there is an ataxia centre in Newcastle, what can they do for him.

What happened to the people on their site who had ataxia? I think they were Americans?

Does anyone have an idea how many people suffer from cerebellar ataxia in the UK. Is it a rare condition or not. I am waiting for a second opinion The first is cerebellar ataxia. does this now get down to a specific type? I live in South Africa.

Is this something to do with ataxia? Does anyone suffer from this too? Is there any medication or things we can do to help? Thanks.

Here in Hull, money raised will be sent to ataxia. I have been collecting donations from family and friends to do a tombola, book, bric a brac , tea, coffee and cake stalls. I have got plenty of helpers on the day . Never done any thing like this before so I am looking forward to it, should be good

I am 32 and have cerebellar ataxia

Hi I am the partner of a cerebellum ataxia sufferer, does anyone know of any local support groups? My partner really needs to talk to other sufferers, he's been diagnosed approx 4 years and is suffering like a grief, grieving for the person he used to be that has now gone.

Is this the norm with Ataxia or is this totally unrelated and maybe I need to see the Dr? I have been quite mobile in the morning but by the afternoon terribly unstable with head pressure and nausea.

My wife Jenny, (she does not want to hide behind the title - the wife) has been lookingh at my blog site https://ataxiafightback.wordpress.com and said she would like to see a page or posts for those who live with an ataxia sufferer. How are they supposed to cope?

My gp referred me to newcastle ataxia centre but my nhs won't fund this, surely I dont have to live In england for this to be done..

Has anybody here tried acupuncture to combat their ataxia symptoms? I've just come across a Danish company, and they specifically mention being able to treat 80% of ataxia symptoms. So I'm rather curious to know if anyone here has tried acupuncture - and if it was worthwhile.

I am 53 and have cerebella ataxia. Have just moved house and having rented for 8 years have just bought a house (share equity). My wife is 51and enjoys good health. I didn't think getting life /mortgage insurance would be so difficult!

I went to the Ataxia U.K conference on Saturday and whilst having a great day l also met some truly amazing people. Having never met anyone with Ataxia ever, it was good to feel accepted and not different or odd and also to learn new things about my condition.

I am now wondering if it is connected to my ataxia.

Starting to wonder if it is Ataxia or MS that I have, as both very similar my vision has been off today also. I guess I am asking if this is how Ataxia affect you on a daily basis? does it progress this quickly as its only been 4 months?

Dear all I have an idiopathic cerebellar ataxia. I am looking to purchase some walking poles. I was thinking about Leki Nordic Walking poles but there is so much choice, I am a little confused and overwhelmed! Any advice would be very much appreciated... Thank you in anticipation. Harriet

Has anyone here been told that Their Ataxia might be functional as their scans have come back negative. Does anyone else have lots of symptoms but tests has been negative.

Is this Ataxia normal or will this fade? Feels like I have the shivers but with tingling especially in hands. Very tired but that's because a 15min stir fry took the entire afternoon. Grrrrrr did taste great though 😌