Ataxia centre Appointment

[Pussycat1]

I have got a 1st appointment at London Ataxia centre. Diagnosed with SCA unknown type in December last year, SCA 3 in family history. What should I expect at this appointment? How can I best prepare for it?

[wobblybee]

🙂 I had my 1st appointment there last year, having previously been seen at Newcastle Ataxia Centre (now closed). This appointment went pretty much the same as any first time with a Neurologist, it was like starting anew. At one time I could reel off my journey with ataxia without any trouble, but it’s been a long one, and these days I really have to concentrate to get things in order. I’d advise thinking about that beforehand, and if necessary making notes. It’s very likely you’ll be asked about family and any connection to ataxia, even though it’s in your file. Read up about SCA3 (if you haven’t already), ask about repeats and new mutations of the existing gene, and if that relates to you. If there’s anything you don’t understand, ask for it to be repeated or put in a different way. The Neurologist who I saw was very nice, and made me feel at ease 🙂

[Pussycat1 in reply to wobblybee]

Thank you very helpful advise. I am hoping for some answers around gene mutations and repeats.

Katie

[ww-wibblywobbly]

I always make a big list of everything I can think of before medical rdvs. As I live in France, we unfortunately don't have any Ataxia centers here. I try to start as many months before as possible and try to mention as much as possible. I don't know why, but before I'd just mention a few things. But then they don't have the complete picture. So now I go with very long list with every symptom I can think of. I add to it when I remember things or new things happen.

I have a genetic SCA, but unknown at the moment. Seems like UK are better at doing the genetic testing than here.

Good luck

Alison xx

[Pussycat1 in reply to ww-wibblywobbly]

Thanks Alison, lhave made a list of symptoms and family history

Katie

[ww-wibblywobbly in reply to Pussycat1]

That's great. I have to constantly add to mine as I remember things or as a new symptom occurs.

Xx

[cocoa]

I go to the Ataxia Centre in Oxford.

I take a complete medical history ~ symptoms / list of medication ~ supplements / list of questions/ everything in duplicate and pass one set over when I arrive.

On my first visit I had blood tests and have done on most occasions since.

Good luck with your appointment.

[Pussycat1 in reply to cocoa]

Thanks very helpful

[flawlesssFayx]

have read yr replies and am glad I couldn't get referred.I've had FA since well stated symptom abt. age 12, now 57. I think I;d hate to have to go thru' all my history

[bevvick1964]

I went to the Ataxia clinic last week and met w wonderful man and much better than the first visit I had which sort of put me off going back but he was brilliant.

I have SCA6 and they are doing some trials so I gave a skin sample.

I’m going to have another MRI and will be seen there regularly.

Hopefully I’ll have some positive appointments from now on

Have a great day everyone.

I’m trying to x