Help: I was wondering if anyone could tell me what... - Ataxia UK

Ataxia UK

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Loubie82 profile image
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I was wondering if anyone could tell me what they do at the genetic clinic. I've got my appointment next Friday xx

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Loubie82
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Cazlyo65 profile image
Cazlyo65

My first visit last week consisted of seeing a neurogenetics consultant who went through family medical history back to my grandparents. He performed all the typical neuro examinations, balance & eye tests and gait. He confirmed I have SCA but has taken blood to ascertain which type. That result will take a couple of months to come back

ToniM profile image
ToniM

Hi Loubie...

I went to the Genetics clinic 09/11 this year at Leeds. When I got there I had to see a councillor and tell them why I was there, we went through the family history of any illnesses and then she asked me why I was there what I wanted from the meeting. I knew from walking through the door that I wanted them to do the test there.

Dad has SCA2 diagnosed this March he told me in May and I had been waiting since then for the apt so when it came round I was sure I wanted to know.

When I said yes to the test it was a simple blood test. Because they know what they are looking for (type wise) she said it could be 4-6 weeks although i know if there is no previous diagnose on type it can take up to 3months in some cases.

I am now waiting for my results it has been 5 weeks so far and as i am counting the days down to get the result (good or bad i need to know in my head so i can plan) She did give me the option of either a letter with the results on or an apt. I said 'i don't see the point in traveling to Leeds for you to tell me there is nothing wrong' trying to see the positives 50% i guess.

I hope it goes well for you

Keep in touch

Toni xx

Loubie82 profile image
Loubie82

Thanks everyone.don't know how much they will get out of my family history causes far as I know no one else had balance and coordination problems.

I had a blood test before they refered me cause they found a connection to type 6 which they said is quite rare n don't know much about n they was referring me cause it could have implications for my family.

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