How many times did you see your Neurologist befo... - Ataxia UK
How many times did you see your Neurologist before you were diagnosed?
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On my first visit to my Neurologist he said he didn't know exaclty what was going on. He sent me a letter and also to my doctor which arrived about three weeks later stating I had atrophy of the cerebellum with a possible degenerative component to it.
On my third visit I was assessed by five Neurologists including my own in the same room at the same time. I was then officially told I had Cerebellar Atrophy/degeneration.
I was referred to a neurologist (Dr Appleton at Alder Hey Children's Hospital) by an orthopaedic surgeon. Dr Appleton referred me for further tests he gave me the diagnosis of Friedreich's Ataxia on my next visit to him.
I saw a Geneticist, back in 1995, and I and my husband, had lots of counselling before they would test me. I was showing no signs at the time, so he said there was no point seeing a Neurologist yet.
I had a letter for the Geneologist from my Fathers Doctor, so had a genetic counciling session then the test the rest as they say is History
After blood tests, the 2nd visit to the consultant (Professor) he sat me down and we had a long talk (he did the talking I just listened) and he confirmed that I did indeed have SCA6
