How far would you be prepared to travel to go to an ataxia centre?

[wildone]

[wobblybee]

Hi Wildone!

Do you mean a support group? xB

[wildone in reply to wobblybee]

Thanks for replying. No, I mean one of the centres in London, Sheffield, or Newcastle,or the clinic in Oxford

[wobblybee in reply to wildone]

I'd read your previous posts, was just checking. Some people travel great distances to Ataxia Centres, I volunteer at Newcastle and some people come down from Scotland. Are you having difficulty being referred?

[wildone in reply to wobblybee]

No, I'm not having problems (not yet anyway). My GP said he'd refer me if I want, so I haven't actually started the process yet, and I know it can take a while. I would really like to go to one - I've heard nothing but good things about the centres and I really haven't had good experiences with neurologists around where I live. The thing is, although the centres aren't that far away (I live in the Midlands), travel would still be a hassle and would be costly. Also I know I have FA so it's not as if I need to go to a centre to get a specific diagnosis. So I was wondering whether going to one of the centres would be worth it.

[wobblybee in reply to wildone]

Well, as far as I know, new patients (awaiting diagnosis) are referred by their GP to the centre. Patients already having a diagnosis are normally seen at a local hospital, the same Neurologist who specialises in Ataxia, sees both sets of patients.

But, anybody can still ask their GP to refer them to

an Ataxia Centre.

The Neurologist who diagnosed me specialises in

MS, he referred me to a colleague who actually specialises in Ataxia.

You need to be as confident as possible in your Neurologist, think about being referred to somebody who specialises in Ataxia, they might have a clinic at a hospital within reasonable travelling distance. Or, would it be possible to

apply for help with travel costs?

[wildone in reply to wobblybee]

I've never had much confidence in any neurologist I've seen, and they've all been local. I know that's probably a coincidence but... I always feel (or possibly made to feel) like a nuisance, because (unlike their other patients, if he/she does not specialise in ataxia) there is nothing they can actually do to treat me. I mentioned being referred to an ataxia centre to my neurologist over a year ago and it didn't go well - I think I've been taken off their list. So I'm going to have to ask my GP for either a referral to an ataxia centre or a new local neurologist. I'm going to see if I can find a neurologist who specialises in ataxia and works locally, and if I can't, ask again to be referred to a centre. Thanks for your help - it's much appreciated.

[Pinkpiglet in reply to wildone]

My neurologist also took me off his list when I asked for for a referral to London. Did go to London though via gp. I have recently spent two weeks as inpatient at London to have eye tests, blood taken, scans, speech therapist, physio, list goes on lol.Had a great time, hospital is brilliant, staff are superb and everyone knew about ataxia without having to explain. Well worth travelling any distance. They also arrange hospital transport too so can sleep on way

[wildone in reply to Pinkpiglet]

Good to know it's possible to be referred without a neurologist. It'll be a novel experience not having to keep on explaining myself. Thanks!

[Tiggywinkles]

I went to The John Radcliffe Hospital from North Devon as it was the closest to me - about 190 miles by road, although I went by train - and although I already had a diagnosis of FA I wanted to see someone who specialises in Ataxia as my local consultant is not that helpful. I am glad I went and have a further appointment to go again this November. It has made them aware of me and if any treatments or trials come along I feel they would know about them sooner than my local hospital.

[tedjohnson in reply to Tiggywinkles]

I see prof talbot at Oxford and. He is very nice and honest. I am really sad to hear you lost your husband last year but you sound so positive. Good luck and keep smiling. Ted

[Tiggywinkles in reply to tedjohnson]

Thanks - try to keep smiling, but it is hard sometimes. Heather

[wildone in reply to Tiggywinkles]

That's exactly the response I'd hoped for. Thanks

[Tiggywinkles in reply to wildone]

Good, do give it a try. If you go once and don't think it worth the trip then you don't have to go again. Heather

[february]

Dear Wildone, I live in the States, so I'm sorry, but I can't offer an opinion. I see my neurologist here every 6 months. He's at the University of Michigan Hospital, about 25 minutes from where I live. I have to say, I'm impressed with all the Ataxia Centers you have across the pond! Whatever you decide, I wish you the best! ;o)

[wildone in reply to february]

Thank you