How old were you when you were diagnosed with at... - Ataxia UK

Ataxia UK

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How old were you when you were diagnosed with ataxia?

HarryB profile imageHarryBAdministrator48 Voters

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6 Replies
HarryB profile image
HarryBAdministrator

I was 15 when I was diagnosed with ataxia. I was initially diagnosed with Friedreich's ataxia but when the gene was discovered a few years later, my DNA was negative. Despite many previous and ongoing tests the cause for my ataxia has not been found.

I was 48 when I was diagnosed but I'm unsure exactly how long I have had the condition. I was always a clumsy and accident prone person ever since I was very young.

Litty profile image
Litty

I was genetically tested for SCA1 when I was in my 30s, but did not start show signs until my 40s.

timk profile image
timkVolunteer

I am 58, nearly 59. I got my diagnosis about 2 years ago. My symptoms are so mild that most people would not know that I have got anything 'wrong'. I stumble a bit when I wake up, take special care over my balance with things that I used to take for granted and feel really 'ataxic' when I have my check-ups! I have CA (probably SCA6) which I have inherited from my dad. He used a wheelchair and slurred his speech, so I probably have this to come, at some point in the future.

maryrose46 profile image
maryrose46

Hi i was diagnosed with freidrichs ataxia when i was 22 but was about 18 when i knew i had it....my elder sister was told she had ca but was then told it was fa when i went to the doctor and we both went to the hospital together..i am now 46 and my sister is 54.

twinkle2508 profile image
twinkle2508

i was told i had something similar to cerebel palsey,then i got a letter frrom my neurologist which said i had Cerebellar Ataxia and as there were concerns about me not using my leftside probably ( when i was younger ), i'd probably had CA since birth. i am now 46 yrs, but i try and walk around with a smile on my face and live as independantly as possible