I have recently see a consultant at the John Radcliffe Hospital and although I was not expecting too much from the visit he did suggest CQ10

[laddie]

may be helpful. I wondered if many people found it helpful and what dosage was recommended

[wobblybee]

Hi Laddie!

Finally the temperature drops!

I started to take coQ10 at 30mg daily for a month. Then 50mg

daily for a month. Currently 100mg daily, this is 3rd month.

I've just been left to my own devices re any treatment etc .

Personally I feel better in myself now, I think I have more

energy, and as far as I can tell it hasn't made anything

worse.

I started at the lowest dosage because I'd once taken

a very high dose of Evening Primrose Oil and felt there

was an adverse reaction, I wasn't diagnosed ataxic at

the time. xB

[laddie in reply to wobblybee]

thank you for your reply I too feel as left to my own devices It was only suggested that this might be helpful no suggestion of dosage or any other help I did get a few more answers to some questions and an appointment for 12 months time by which time they will have expected the disease to have progressed as it has been over the last few years!!!So it is back to the merrygoround that I seem to be on lately and help yourself as much as possible

[wobblybee in reply to laddie]

It's frustrating isn't it? So, have you made

any decision about coQ10?

[curlewhill1943 in reply to wobblybee]

the best coq10 is Japanese called high absorption coq10 by pureclinica 300mg

[laddie]

no I'm still thinking about it as I will have to order it from the internet which makes it difficult to know the size of tablet (I have trouble swallowing tablets or capsules)

[Dory]

I too recently attended the ataxia clinic at The John Radcliffe Hospital. I have SCA6. I specially asked about CoQ10 as I have read that the stuff for sale in health shops or over the internet is of too low a dose to be therapeutic. A therapeutic 'brand', on prescription is called Idebenone. Apparently as we get older, we are less able to metabolise CoQ10 into Ubiquinol & so should have Ubiquinol on prescription. Armed with that information, I asked whether I could have a blood test to see if my CoQ10 levels were low or not. I wasn't expecting the answer I got ! It seems that there is no scientific evidence that CoQ10 supplements are beneficial - & my request was politely declined ! For anyone who wants to try CoQ10, what have we got to lose ? Some people swear by it...

[robo1 in reply to Dory]

Hi Dory

I now take ubiquinol and have to buy it, its rather expensive but I find that Amazon offer a good price. I can't say I have noticed any benefit but I live in hope! Bob

[laddie]

Thankyou Dory for your response.I have started on coq10 as you say what have we to lose I have only taken it for a few days so I have felt no difference yet but I live in hope the only positive help I had from the John Radcliffe was that I probably do not have a genetic type of Ataxia so hopefully won't pass it on!