Ataxia Clinic : Hi All, I have an appointment... - Ataxia UK

Ataxia UK
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Ataxia Clinic

Jacqui-A
Jacqui-A

Hi All,

I have an appointment later on in the year at the London Ataxia Clinic and was wondering if I will get anything out of it as I see a top neurologist now and have a circle of help if needed and I don’t want to waste their time if they can’t help me in any way, I have Cerebella Atrophy in association with Anti-Purkinje.

Since the lockdown I have got progressively worse (as have others on this site) my mobility isn’t good and my speech has got rather gritty.

I know what I was capable of two years ago and I know how much it has progressed, the next two years frighten me as to what’s in store.

15 Replies
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Hi Jacqui,

My own opinion is that I speak to everyone about my Ataxia, which has, like yours, deteriorated in the last 18 months. I have had several falls & near misses during that time, more than in the previous 10.5 years since my diagnosis. I now use a four-wheeled walker - a significant step for me.

Coincidentally 10 days ago I had my own annual appointment at the Ataxia clinic in Southampton Hospital though by telephone under the current lockdown. My consultant told me of a recently discovered 'late onset cerebellar ataxia known as CANVAS, but this is usually associated with a sensory neuropathy'. As I don't have any symptoms of this it was ruled out.

Every time I have any interaction with other health professionals or Ataxians there may be something to be learned, so unless it is difficult for you to get to London I would recommend attending.

Good Luck!

Derek.

Jacqui-A
Jacqui-A in reply to woody1404

Thank you Derek

For years I went to the Ataxia centre in London and saw Dr Giunti there. I found it a waste of time because it was just for monitoring purposes and was very far so took a lot of time. I have Late Onset Cerebellar Ataxia and now once a year see a Neurologist in Cardiff, just for monitoring the condition and in case there is a breakthrough. It also takes a lot of time but at least it is not so far away. Now everything has been stopped because of the Corona virus.

In London at the Neurological Hospital I also saw a Neurological Ophthalmologist but that whole department does not exist anymore.

Jacqui-A
Jacqui-A in reply to klazien

Hi klazien,

I will take your comment on board, thank you,

Could you please tell me about your Late Onset Cerebella Ataxia (I’m not sure if that’s what I have)and how you are coping, If you don’t want the world to see you can always p.m. me. Thanks Jacqui

klazien
klazien in reply to Jacqui-A

I was first diagnosed in 2005 when we lived near Liverpool and I saw a a Neurologist there. After an MRI that did not show anything and several, also negative, gene-tests that they had at that time and I don’t remember which, that Neurologist did not know what it was so decided by lack of knowing what to call it, to call it Idiopatic late onset cerebelar ataxia.

At that time I could not walk without a crutch and not ride a bicycle anymore because of lack of balance but nothing else was wrong.

About 2 years later I felt a slight deterioration in my speech. My hands became more trembly than ever and the left one had become very uncontrollable so cannot be used at all.

Like an uncontrollable shake.

I went from 1 crutch to 2 crutches and then to a rollater

My sight had already deteriorated before this ataxia started (low tension Glaucoma so also incurable) and driving a car was already out.

Now I am almost blind but can still read very enlarged print such as my kindle and online newspapers. Speaking has become very unclear and difficult. and I cannot stand without holding a rollator.

I am also very tired all the time but seem to have a little bit more energy in the mornings.

My thinking has not deteriorated at all and there is no pain.

Jacqui-A
Jacqui-A in reply to klazien

Thank you for your details, very helpful, I wish you well.

There was a similar post about the usefulness of an appointment since ataxia is incurable. I’d just encourage anyone to think carefully before turning an appointment or therapy down, as once you’ve ‘opted out’ it can be slow to opt back in at a later stage.

Jacqui-A
Jacqui-A in reply to MaryRH

Thank you Mary

Hi Jacque. I think we have all asked ourselves this question and there is no simple answer! After several visits to hospitals I decided to accept that like many illnesses there are no clear treatments and so I no longer go to see anyone. The good point of this is the total lack of stress——-no driving(I can’t anymore) hospital parking etc etc. I use a wheelchair in the house (to avoid falls)and a scooter to go out and about during the day

Interestingly Derek mentioned CANVAS which I have got and I would be interested to hear from anyone else who has got it

Jacque, I would advise you to accept all the help you can get and make up your own mind what you want to do sometime in the future

Very best wishes Ted

Jacqui-A
Jacqui-A in reply to tedjohnson

Thank you Ted

wobblybee
wobblybee in reply to tedjohnson

🤔 I was tested for CANVAS too. A reply from the Neurologist ‘It seems you test negative’. I would have preferred yes or no.

Unfortunately I too have got much worse x

Ok I will tell you. I have visited the London Ataxia Centre - Dr Giunti for many years.

We had an appointment recently with Dr Giunti and her new nurse by phone. We live on Herefordshire/Worcestershire border and drive now but that takes an entire day, is tiring expensive and my husband has to take a day off work. We had a much easier phone call which would have been even better if they had used Zoom/WhatsApp/Teams to make it a video call. Now follow-up appointment booked for July. It was actually the most productive meeting we’ve had with them and the least stressful and tiring for me. x

Litty, sorry to here you have got worse too, thank you for your comment, very helpfully. Take care and stay safe x

🙂 I had a referral to Queens Square from Newcastle, and from there a referral to somewhere else in London specifically to help with BPPV. It’s worth going, there’s always the possibility of something useful coming out of the appointment.

Jacqui-A
Jacqui-A in reply to wobblybee

Thank you wobblybee I will go, the comments I have received have been really positive and like you say I may get something out of it. Stay safe

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