After reading the Ataxian I'm thinking of asking for a referral to the ataxia centre in Newcastle for my son.

[lindadoc]

I'm a little concerned about what his Neurologist would think of this. Has anyone asked for a referral other than there own DR and hospital.

[Litty]

Definitely, I would go for it. That is what the Ataxia Centres are for.

When I was genetically tested for SCA1, once I had started to show signs, I went to my GP and asked to be referred to the London Ataxia Centre. It is brilliant because I see them annually and they are all experts on ataxias, and understand and know exactly what you need. Also I think that if any treatments do come along, they will know about them first.

It is fine for you to choose which Specialist you want to see. It is your right under the NHS choices

nhs.uk/chq/Pages/1094.aspx?...

Good luck if you decide to ask.

Litty : )

[Razzy]

I was Lucky that my neurologist came from Sheffield, as did the geneologist who did my test, I was sent to see DR Marios Hadjavassillou at the Sheffield Ataxia centre right at the onset of being diagnosed. It is well worth it as you get a better understanding of which of your symptoms are Ataxia related, your son would be better off for visiting them.

Good Luck

Razzy

[lindadoc]

thank you for your opinions, what i'm going to do is write to his neurologists and asked if she will refer him

[Litty in reply to lindadoc]

Good idea. Hopefully she will. Keep us posted please.

Good luck

Litty

[Jim95]

I am 45 years old I was diagnosed with cerebella Ataxia over 3years ago I was going to the Glasgow southern general for about 9 years and they still haven't got any clue about me then I was told to go to Newcastle and the consultant professor on looking at me said he thinks he knows what it is I asked him but he said he doesn't want to tell me but after my yearly visit to Newcastle he told me that I had Ataxia I am on riboflavin and Q10 tablets but I don't think they are working if you want to get in touch with me just leave your number I am not very good on the phone but I can text

[Jim95]

Go for it referral to Newcastle