European research to cure ataxia

[isabelalfaiate]

I went to draw blood and did all the tests for the research that is being done by many European countries together. I did very well at all the tests done, the doctor told me I am within the top 5% group, that are doing very well. This pleased me, but the tunning fork test on my ankles and even hands, I could not feel the vibration. Is there anything I can do to reverse this (some exercise). The neurologist also said it is very important to keep up the physiotherapy. They also congratulated me on my very positive attitude. But that is me, I prefer to look at the glass half full rather than half empty and instead of looking backwards I look forward to what great thing will come my way. The researcher told me that within the next few years something very positive will happen, They are dealing with alot of bureaucrathy and ethics. The neurologist said this study will probably be very helpful to the next generation. Here are two conflicting opinions, so I choose the best for time being.

Best wishes

Isabel

[piglet3]

Oh I do hope some progress is made, if not for us, then for our beautiful children.

[majajefferies]

Hi,

Would you mind giving us more information?

What research and who is your neurologist?

Many thanks, Maja

[isabelalfaiate in reply to majajefferies]

This is research that is being done on ataxia in many european countries in a joint effort - ataxia UK i am told is one of them. There is blood tests taken over a perio and analysed. I was told eacountry (research center) studies a different aspect and then they bring all the conclusions together, I am sure you will be able to find out more about this from ataxia UK, my center here is the research center of the faculty of medicine of the University of Coimbra Portugal

[Litty]

Well done on the tests and fingers crossed x

[foffee11]

Good news thanks for sharing I use rebuilder on feet for vibrations

[Guyb]

I was told same at Sheffield

[geneticallygeneric in reply to Guyb]

told what?

[Guyb in reply to geneticallygeneric]

That there was nothing else they could do for me just ease it ,the tests are genetic looking for a rouge gene

[billiecorton]

In March the Institute of Neurology in London published some research identifying a fault on gene RFC1 as being responsible for many late onset ataxias.