Harriet

[cclive35]

This is a message for Harriet. I'm not sure if I have done the right thing but maybe you could advise me. I was diagnosed with cereal ataxia 26 years ago. Since then I have had a lot of neurological problems and I'm under doctor sen at John Radcliffe hospital.in the last few years I have broken ankles, broke my hip, have epilepsy and the list gos on, I've written a couple of posts on here but not sure I was writing them because of ataxia . My balance , vision, coordination is very poor and now I even have been a carer. I called ataxia UK and the very friendly lady advised me to get my gp to refer me to Dr tafaris because things have moved on so much since I had brain surgery in 1994. I was a support worker and carer myself I worked with many service users with varied difficulties so i feel I should know. I suppose I thought it would be ok tomorrow. The last thing I want to do is go behind Dr sens back who has been fantastic. I go to Nuffield as well to see various Dr's. Im just not sure any of this is due to ataxia so maybe l could rule it out with a diagnosis. Your thoughts would be appreciated

[HarryB Administrator]

Hi cclive35

Thank you for your question. I am so sorry you are having to go through all this. I am really pleased you got in touch with Ataxia UK.

When you have a chronic (or long-term) disorder like ataxia it is a common trap to fall into to put any symptoms you have down to the ataxia. You seem to have the opposite problem. As you have other medical disorders diagnosed, you are not sure if the symptoms you have (which do sound neurological) are due to these or the ataxia. That must be very confusing and distressing.

I think the advice you were given from Ataxia UK was right. However I would discuss your problems with Dr Sen instead of your GP and ask him if he would refer you to Dr Tofaris, particularly as they are both neurologists at the same hospital and will probably know each other. If I were in your shoes this is what I would say to Dr Sen-

'I am concerned that some of the symptoms I have, in particular my deteriorating balance and co-ordination, are due to the cerebellar ataxia I have. I have been in touch with Ataxia UK and I have been recommended to ask for a referral to Dr Tofaris at this hospital as he sees a lots of other patients with ataxia. I understand that a lot has changed in the field of ataxia since I was diagnosed 26 years ago. I don't want to offend you at all but as he has more experience in ataxia I think I would benefit from seeing him. Please could you refer me to him?'

I am going to end with a question to you. Have you ever been told what the cause of you cerebellar ataxia is/might be?

Harriet

[cclive35 in reply to HarryB]

Hi Harriet firstly I would like to thank you for your swift reply. A gp came today and has referred me to dr to tofaris. I don't have an appointment with Dr sen for 4 months. Apparently there would be a very long wait to see Dr tofaris but I could email my intention's to the Secretary of Dr sen. In answer to your question I think I was diagnosed after brain surgery but to be honest it was so long ago . If it is ataxia I don't like it much ☺ tell me he will make me all better!!!

[HarryB Administrator in reply to cclive35]

I do think you are doing the right thing going to see Dr Tofaris. Tell Dr Sen at your next appointment why you asked for a referral to Dr Tofaris. I am confident he will understand.

[cclive35]

Thanks for the advice and for being so helpful, best regards, clive