I was diagnosed with Ataxia 5 years ago, it took... - Ataxia UK

Ataxia UK

4,032 members4,571 posts

I was diagnosed with Ataxia 5 years ago, it took them 11 years to diagnose.

Loza1976 profile image
8 Replies

I was diagnosed with Ataxia 5 years ago, it took them 11 years to diagnose me but they still havent establised exactly which strain of Ataxia I have

I would like to meet people of a similar age to myself, going through the same problems of Ataxia that I face daily.

Written by
Loza1976 profile image
Loza1976
To view profiles and participate in discussions please or .
8 Replies
wobblybee profile image
wobblybee

Hi Loza 😊

As a starting point, you could look on AtaxiaUK main site. You'll find a list of peer led support groups, there are quite a few throughout the UK, so chances are there's one within reach of you😊 I'm the contact for Gateshead😊xB

Loza1976 profile image
Loza1976 in reply to wobblybee

Many thanks :-)

silkwood profile image
silkwood

I am near Salisbury and have a similar story.At 55 fed up with being the worst.Also not sure where to go locally as diagnosed with a sort of CA with elements of this and that.Confused and feel in limboland.

Loza1976 profile image
Loza1976 in reply to silkwood

Im sorry to hear that.

babygirl123 profile image
babygirl123

Hi Loza, I have been diagnosed with CA unknown cause, for two years. I am having tests done at the moment at Sheffield, I will be going back for an MRI scan in 2 weeks to see if a cause can be found. I am nearly 48 and live in Hull, Where do you live?

Loza1976 profile image
Loza1976 in reply to babygirl123

Sorry for the delay. Just got back onto the site, I live in London.

How did the MRI go?

babygirl123 profile image
babygirl123 in reply to Loza1976

Hi Loza,

I went for my scan it was ok, not heard anything from Sheffield yet. Might hear something soon. Have you found a support group near you yet? I got to one in York, Its nice to meet with other people who have ataxia.

findlay66 profile image
findlay66

My husband has cellebellar ataxia not sure of cause either had symptons about 5 years now he is 62 years old now

You may also like...

Cerebellar Ataxia of my 3 Year old son

or does anyone know people from Israel that would like to hear of a community like that? Best...

? Gluten Ataxia after 10 + years. Is GF diet worth it?

Hi all, I have have suffered with ataxia for over 10 years & last year was advised to start a...

Had another consultant this evening I don’t have Ataxia

soon. I was diagnosed pre MRI with Ataxia. Tonight my consultant told me I don’t have Ataxia but I...

Newley diagnosed with cerebral ataxia

I can't handle this. I was diagnosed a year ago and am finding it very hard to accept that I can't...

i think i have episodic ataxia

something. i have been bad for years and i now am 42 years old. now could my kids have it. just...