1413972 tn?1305579764

eposidic ataxia

hey all.
i jus wondered if anyone else had heard of eposidic ataxia (think thats spelt right) and any information id be greatful for. thanx!
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1340519 tn?1305166702
Hey! My neuro thinks i have episodic ataxia... I still have to get testing done and I'll write about my symptoms when I get another hand  (rockin baby to sleep) - but check out this site for info http://ghr.nlm.nih.gov/condition/episodic-ataxia
Helpful - 0
944787 tn?1287084773
Episodic ataxia (EA) is an autosomal dominant disorder characterized by sporadic bouts of ataxia  (severe discoordination) with or without myokymia (continuous muscle movement). Ataxia can be provoked by stress, startle, or heavy exertion such as exercise. Symptoms can first appear in infancy. There are at least 6 loci for EA, of which 4 are known genes. Some patients with EA also have migraine or progressive cerebellar degenerative disorders, symptomatic of either familial hemiplegic migraine or spinocerebellar ataxia. Some patients respond to acetazolamide though others do not.

there are 6 types 1 through to 6 all affecting different parts and/or chromosomes.
episodic ataxia is hereditary.

please go read http://en.wikipedia.org/wiki/Episodic_ataxia
its full of info.  
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Avatar universal
hi  emza and all,

this is wonderful seeing an Ataxia foorumm now!
I have read  a little    about EA but do not  have it
Is that what your    neuros think for you?
glad to meet you

p.s. hi cbb1122.
I am certainly not a doctor, but have your doctors mentioned a possible chari malformation (sp) for you?
Helpful - 0
1340519 tn?1305166702
Actually I have mentioned Chiari to my neuro... and the ENT who saw me previously.... they both think I'm nuts... I only found out about Chiari because of this forum and ended up setting up an appointment at The Chiari Institute in NY on my own.

I have a 2mm herniation, but since I don't have headaches as a main symptom he doesn't think its Chiari... bahh!!!

But thank you for making the note!
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Avatar universal
hi again CB,

i am sorry you did not get annn answer at the institute. Is that were they said you  have to have headache? I am surely not familiar with chiari. but my thought iss many people do not fit a cracker box.

I guess it is not easy as such, but my simplistic mind would think whether is  iis 2mm  or 10mm, a  herniation is  just that, a herniation. Plus with   ataxic symptoms, would that not be realivant? humm.

i know it iiis very difficult to have to be your own advocate.
I really do hope youu find and get the help and answers you deserve and need.
take care, amo

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