Neurologist/consultant at John Radcliffe - Ataxia UK

Ataxia UK

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Neurologist/consultant at John Radcliffe

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ww-wibblywobbly

Hi all,

Hope everyone is keeping well and starting to venture outside again now.

I just wanted to ask if anyone can recommend a good neurologist/consultant at the John Radcliffe hospital in Oxford. It's not for me, it's for my brother who has been experiencing fits through which he remains conscious and experiences a lot of pain. I don't think it's anything to do with ataxia, but hopefully some of you can help with a recommendation.

Stay positive folks - I'm having a pity day today ;(, but tomorrow will be better

Love

Alison x

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Have you got a firm diagnosis for your ataxia?

If so, he could ask to be referred to The Oxford Ataxia Clinic. They will do the necessary tests.

I went there for many years and always found it a positive experience.

I don't have an exact diagnosis for my ataxia. Also he is my half brother so it's extremely unlikely that it's the same as mine must be from recessive gene as nobody else in the family has it. Also his symptoms are nothing like mine. The neurologist seems to think that it's some type of epilepsy. He needs to have further tests to find out which is why he's going to John Radcliffe hospital in August.

I guess most people on this site will be going to the ataxia clinic then, so my question is maybe pointless??

Thanks for replying

Xx

Not pointless, no. Oxford isn’t an accrediated ataxia centre any more but Oxford is lucky to have a sizeable team of very experienced neurologists who in my experience, consult and refer between themselves depending on their speciality. I saw a ‘general’ neurologist (very active in his own research field and it turned out, spot on about my SCA) who referred me for an MRI straight away, and to the ataxia specialist who I saw a while after that. The JR run several neurology clinics and I can’t make head nor tail of what they’re called, but I wouldn’t worry about the specific clinic: they’ll book him in with the most appropriate neurologist depending on which clinic they run. They all have their own secretaries to so you can always ring for info. You just need to stick with the recorded messages (epilepsy or MS?!) until you can speak to a human being! Your brother needs to mention your ataxia though, as someone says below there could be a link, even if it’s unlikely. X

Hi,

I think it’s a good question, because a lot of juvenile onset Ataxias come hand-in-hand with epilepsy.

Our son is seeing an epilepsy specialist, Prof. Matthew Walker at UCL.

The man is an absolute saviour. We have dealt with many a neurologist for Ryan’s epilepsy in the past 10 years and have had nothing but problems, wrong medication, ego trips at GOSH, inappropriate meds, no calibration...

I know it’s not very local to you but it’s only a couple of hours away.

He also works very closely with prof Giunti who is the head of the Ataxia Centre at UCL.

I would consider having him do the diagnosis and the medication, and then you wouldn’t need to see him regularly (we write to him about any changes necessary...)

Good luck!

Thanks for replying.

Now to show my ignorance, where is UCL? In my defense I do live in France and am treated here. But my brother lives in UK.

Xx

I am so very sorry to presume!

London, University College London, they are based in the Hospital for Neurology and Neurosurgery, Queens Square, just next door to Great Ormond Street Hospital for kids.

He has the right to choose his own consultant/hospital, he doesn’t have to use the most local one.

I struggled along trying to find somebody decent for Ryan for such a long time, it has been amazing to speak to a man with such vast experience, knowledge, expertise and (most importantly in my humble) genuine interest in the wellbeing of his patient!

If there is anything we can help with just let me know!

Ryan has DRPLA, a rare form of SCA. Do you have a specific diagnosis (if you don’t mind me asking)? My husband is a carrier, but his brother dodged the bullet!

Hi, thanks for that information.

I unfortunately don't have a specific diagnosis yet, just genetic SCA. I was hoping to see a consultant at Bayonne this year about some further gene testing - but like so many things this year it's had to go on hold due to the covid-19.

I'm really hoping that my brother doesn't have ataxia 🤞

We were supposed to have an ISO for Ryan’s DRPLA tested at some facility n Paris and that was stopped due to Covid!

I had to really push to get Ryan diagnosed properly.

I just hope French health system is better than what we’ve experienced.

In my experience the French health system is excellent, but they don't have any ataxia clinics here

I’d think getting a referral from his GP would be your/his best route to take, as they’ll likely be the ones who are best to know which clinic would be of most Benefit to him? Failing that you could try typing the hospital you’re after & then typing in neurological specialists for fits & a list should come up on which consultants deal with that type, tho you may have to go private if you want to take that route, which could be very expensive. Good luck.

Thank you.

He is considering going privately for an initial consultation if need be.

Xx

It would certainly be quicker to get an appointment going privately, you & your brother can always request to look at his medical files from his GP, you maybe able to find some information somewhere on there with regards to his fits, possibly something you weren’t aware of or you missed, which then may make going to the right consultant easier if you know what a consultants specialties in xx

He will need a referral from his GP.

But, if he says that he has researched it and had high recommendations for a particular consultant, the GP should refer him to wherever he wants to go.

Also, the discomfort should warrant an urgent referral (just a different type of form the GP fills in) which would put him on the top of any waiting list for the said consultant.

Please have a read of this:

uclh.nhs.uk/OurServices/Ser...

uclh.nhs.uk/OurServices/Ser...

I have spent 10 years trying NHS and private consultants, this is the best place for him to start.

The Gowers was shut due to the pandemic, but as everything should be re-opening soon and it us a tertiary centre (a NHS consultant has to refer to it).

My son went to the equivalent unit for paediatric epilepsy assessment in Surrey for his videotelemitry and it was very helpful as they can do all the necessary tests (EEG, sleep EEG, video EEG, MRI...) there and the UCL consultants work there so the results and optimal treatments are immediate.

I am not sure which of their consultants have a private practice but Prof Walker runs the whole thing and I would (again) highly recommend your brother starts at the top.

Epilepsy treatment is very complex and there are a variety of options available (Ryan has medication treatment and a VNS implant).

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