Neuroligist : After some info, my son age 22 has... - Ataxia UK

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Neuroligist

lindadoc
lindadoc

After some info, my son age 22 has cerebellar Ataxia, diagnosed at 13, had regular appointments with neuroligist but since being an adult he has seen a neuroligist for his epilepsy not his ataxia, but now he hasn't seen a neuroligist for over a year. I think seeing a neuroligist for his ataxia will help him get the care he needs. Does everyone with ataxia see a neuroligist.

13 Replies
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I see a neurologist once a year.

I used to attend the Ataxia Clinic at John Radcliffe Oxford. After a few years I asked to be transferred to a hospital nearer to home.

My consultant arranged it and found a neurologist with a special interest in ataxia.

I hope this helps . I wish your son well.

lindadoc
lindadoc in reply to cocoa

Thank you

Hi lindadoc might be a good idea to ask your GP for a referal to ataxia specialist centre. We attend Sheffield they were great in getting us the help needed, see them every year. Hubby also has epilepsy, but neurologists for that were rubbish, no help at all, can't praise support from ataxia centre enough, also helped us get answers about his epilepsy so very helpful. All the best

I have exactly the same but have a rare type of epilepsy so I see a neurologist to monitor both

🤔 There are types of ataxia that are linked to Epilepsy, so there will be Neurologists who specialise in this. But it’s generally accepted that actually being able to referred to one of them isn’t easy, there aren’t that many. Currently, I’m seen every 18mths.

rankin1st
rankin1st in reply to wobblybee

Well done wobblybee and cclive we see two different ones which isn't ideal unfortunately, agree Wobblybee that difficult. Shame really as time consuming but makes holistic treatment difficult! Although we feel blessed that we got ataxia support, that opened doors to better support locally 😊

Where do you reside?

Glasgow

I have SCA in family since 50 years , 6 members right now, seeing Neuro will just give you peace of mind but WILL NOT change the outcome sorry

lindadoc
lindadoc in reply to Sunny8088

I'm aware it won't change his outcome, but thinking it will help when he needs referrals to occupational therapy, physio etc

Maybe folk will correct me if I am wrong but I am under the impression that your GP is responsible for referrals. The other specialists report back to your GP, who then calls on support from others. I suggest you ask for a review of the condition with your GP explaining your worries, asking if OT's or any others could help with some of the practical issues.

HarryB
HarryBAdministrator

Hi Linda

I just wanted to let you know a new neurologist has been added to our list of neurologists with an interest in ataxia, and she works in Glasgow. Please look at the following link. Dr Brennan is at No 19. You could be referred to her by your GP.

ataxia.org.uk/Handlers/Down...

Best wishes

Harriet

lindadoc
lindadoc in reply to HarryB

HarryB thank you, I'll try and get our GP to refer him

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