Oxford Ataxia Centre at John Radcliffe Hospital

[Grapes12]

Has anyone been to the Oxford Ataxia Centre?

I have an appointment there next week and it would be great to know what to expect.

I haven't had the best luck with medical professionals so am hoping my experience will be a lot different and hopefully positive.

Thank you

[Tiggywinkles]

I have been to Oxford for appointments since 2013, so know a bit about it. What would you like to know? Who are you seeing? What type of ataxia do you have?

[Grapes12 in reply to Tiggywinkles]

Have messaged you

[cocoa]

I have been several times and always found it a positive experience.

If I can be of any help let me know.

[Grapes12 in reply to cocoa]

Thank you for your reply.

I am seeing George Tofaris; is that who you have seen?

[cocoa in reply to Grapes12]

I have always seen Dr Nemeth.

I am signed up to take part in research and she has also put me on the 100,000 genome project.

Good luck with your appointment.

[Grapes12 in reply to cocoa]

Thank you.

I am on the 100,000 genome project as well.

[Nichod100]

My husband is going next month to see Dr G Tofaris and the next day Prof P Rothwell . I think Dr Tofaris is the Ataxia Specialist . I have no idea about the Prof though ? My husband has Cerebellar Atrophy and Parkinson’s Plus Syndrome . I would be interested to know more aswell.

[Libra7]

There are three Ataxia Specialist Centres in UK - Sheffield, London and Edinburgh. Oxford is not one of them. I do so hope that your experience in Oxford is better than mine and I am pleased that some have reported a more positive feedback. I had an appointment with Dr Tofaris over a year ago. He had obviously forgotten I was going and a call had to be put out to find him. He was in a great rush when he finally appeared and I felt my consultation was less than positive (was it because of my age - 77 years?). I later discovered that his expertise lies in Motor Neurone Disease. When I asked about research he told me that it was unlikely that there would be any in the next five years! (Refer to AtaxiaUK to find lots of research going on). I do hope that you find your experience beneficial. Good luck.

[Ljjjjjjjjj in reply to Libra7]

Oxford cettainly does specialise in staxia and dr tofaris and professor sen are absolutely fantastic

[Libra7 in reply to Ljjjjjjjjj]

Pleased your experience has been better than mine

[Ljjjjjjjjj in reply to Libra7]

Didnt mean to be rude in anyway i suppose its maybe who you see or the timing. After 30 yrs of being mis diagnosed and feeling like a number i was referred to sheffield or london i went to london snd yes they did sort medication and proper neuro physiotherapists but i was still made to feel like a number. I presume they were very busy and under pressure which was why i was referred to john radcliffe but im very suprised and i know dr tofaris would also be to know you had a bad experience. Again im so sorry if i came across harsh but for me i couldnt reccomend any more highly

[Libra7 in reply to Ljjjjjjjjj]

I am sorry to hear of your frustrating experiences over the years in getting a correct diagnosis. Dr Tofaris is a clinical geneticist so is probably more interested in your case than mine as I had already been diagnosed when I saw him. He is probably very good at diagnosis. As my type of Ataxia is hereditary he focused on the genetic aspect of my case which I had altready discussed with my children. Perhaps I was expecting too much because I know there is no cure, medication or treatment but Dr Tofaris’ dismissal of any research left me feeling hopeless and the appointment a complete waste of time.

I am lucky in so far as I was 71 before I had the first symptom 7 years ago. I can’t help feeling that when one reaches this age there is a certain lack of interest shown by some of the medical profession. One just has to ‘get on with it’.

Referring to the Ataxia UK booklet ‘Management of the Ataxias’ Section8, there are only three ‘Specialist Centres’ and 12 other ‘Centres’ of which Oxford is one.

Bast Wishes

[RN12120]

Hi, I have just written a new post following new membership! My mother is due to see Dr Tofaris at the Neurogenetics clinic. Is this the Ataxia clinic?

[Grapes12 in reply to RN12120]

Hi, I'm not to sure I first saw him in is movement disorders clinic which covered ataxia. But now I see him in the Neurogenetics clinic.

[RN12120]

Hi. Wonder what the difference is ? And why you’ve been transferred to different clinics.

[Grapes12 in reply to RN12120]

I'm now being seen in the genetics clinic as they have found that my issues are genetic.

[RN12120 in reply to Grapes12]

Oh I see. Well My mother hasn’t been screened for anything genetic except The SCA’s which were all negative. It’s rather odd as she doesn’t have an ataxia diagnosis although they mentioned she has ataxic symptoms. So what I can gauge from this is the Neurologists believe her issue to be genetic and that’s why we are being seen by Dr Tofaris ? Hopefully Dec brings us some answers !

[Grapes12]

I'm really not sure. Good Luck and I hope you get some answers!