Confused

I'll have a presentation as an expert by experience for a group of future nurses tomorrow. I'm now soooo confused with the ataxia classifications and need your urgent help. I thought that all ataxias are somehow connected to the cerebellum, but obviously not:http://en.wikipedia.org/wiki/Sensory_ataxia. Are there others as well? Of course this is " a minor detail", but I'd like to know instead of talking rubbish...

All Ataxias are different;have different causes. But injury to the cerebellum is a comnmon feature.Many of us suffer from declining mobility though not all.It is easy to get confused.

My C Ataxia means I have no balance so I can just about walk aided and stand up with artificial balance.

My focus not my sight is affected.

My speech is staccato and nor slurred caused by breathiing incordination not flabby muuscle control in the mouth.

This year I have developed intention tremors not resting.As yoou can see there is a lot of variety.My tremors do not respond to Parkisons drugs.

I do not experience mental fatigue and spasms or light problems in crowds but we are all different .Some will have different symptoms.No wonder you are confused.Hope your talk went well- daughter is a nurse so I revised for all her exams .

Thanks, Marie, for your reply! I am unfortunately quite familiar with the symptons of the cerebellar ataxia (since I have them all...), but I am looking for some info on other types of ataxia. I am not trying to teach them - good for them! I will mainly be telling them about my life with a rare disease. My rehab will be the main topic there.

Anna, I have problems with both sensory and vestibular ataxia-- and to make things more confusing I’m actually getting better -not worse. No shrinkage in my cerebellum and no confirmed genetics so far but I’ve been diagnosed with spino cerebellar ataxia 11 years ago. My mother had Ataxia and now my brother too. 11 years ago you could barely find any info on google about this. Now there is tons. Also my docs are now more unsure about exactly what I have - some simply saying I have a hereditary Ataxia. At any rate these Sensory ataxia and Vestibular ataxia definitions weren’t around 11 years ago. This is new. As time passes the researchers are learning more and creating more definitions. This is a relatively newly identified condition and there is much more to be learned. The best practioners are the ones who understand this and keep an open mind. Here’s a link that may have helpfuf info: http://www.livingwithataxia.org/forum/topics/sensory-neuropathies-and-ataxia

Thank you, maryseas! You saved my day!

maryseas said:

Anna, I have problems with both sensory and vestibular ataxia-- and to make things more confusing I'm actually getting better -not worse. No shrinkage in my cerebellum and no confirmed genetics so far but I've been diagnosed with spino cerebellar ataxia 11 years ago. My mother had Ataxia and now my brother too. 11 years ago you could barely find any info on google about this. Now there is tons. Also my docs are now more unsure about exactly what I have - some simply saying I have a hereditary Ataxia. At any rate these Sensory ataxia and Vestibular ataxia definitions weren't around 11 years ago. This is new. As time passes the researchers are learning more and creating more definitions. This is a relatively newly identified condition and there is much more to be learned. The best practioners are the ones who understand this and keep an open mind. Here's a link that may have helpfuf info: http://www.livingwithataxia.org/forum/topics/sensory-neuropathies-a...

Don't know whether you still have time - I'd recommend www.ataxia.org.uk

Lots of clear information.

Hi my friend Anna,

Yes I know there are so many classifications. My ataxia IS from the cerebullum but I know others are not. I wish I could help but even with having ataxia for a couple of years now- I'm still not an expert. I wish you Good Luck on the presentation. (But I know you'll be fine)

What is Vestibular ataxia?



maryseas said:

Anna, I have problems with both sensory and vestibular ataxia-- and to make things more confusing I'm actually getting better -not worse. No shrinkage in my cerebellum and no confirmed genetics so far but I've been diagnosed with spino cerebellar ataxia 11 years ago. My mother had Ataxia and now my brother too. 11 years ago you could barely find any info on google about this. Now there is tons. Also my docs are now more unsure about exactly what I have - some simply saying I have a hereditary Ataxia. At any rate these Sensory ataxia and Vestibular ataxia definitions weren't around 11 years ago. This is new. As time passes the researchers are learning more and creating more definitions. This is a relatively newly identified condition and there is much more to be learned. The best practioners are the ones who understand this and keep an open mind. Here's a link that may have helpfuf info: http://www.livingwithataxia.org/forum/topics/sensory-neuropathies-a...

I think these site is great: http://www.medindia.net/patients/patientinfo/ataxia.htm. And thank you all for your kind words, I'm off now!

I think the words "veritable" and, "minefield" can be used here.

Yes this is a nice reference and explanation. Thanks.



Anna Heikkinen said:

I think these site is great: http://www.medindia.net/patients/patientinfo/ataxia.htm. And thank you all for your kind words, I’m off now!