Does anyone on here have Episodic Ataxia?

[mcrgirl90]

I've met people with some of the more common types, but I have Episodic Ataxia and have never met anybody else with it. If anybody could help, it would be great.

[godstonesurrey]

I have Episodic as well

[mcrgirl90 in reply to godstonesurrey]

How long have you had it?

[joybells]

Hi, I have only just joined this site, having only found out yesterday, after 8 years of possible me,ms, vertigo, etc,etc etc,etc,etc.etc. that my doctor and neuro have actually labelled me as having episodic ataxia and partial seizures. I feel a little shocked but also, so relieved to have an actual diagnosis. On this point, i decided to research it , and i cannot believe that all of my symptoms are exactly the same and I am not going completely mad. I have for years, told specialists and doctors that some days my hands will drop things, not hold onto things, or not let go of things (which is just as frustrating) and will not pick objects up, even as light as a spoon or holding onto a knife and fork (i'm sure you will know what i mean) and of course all the other problems associated. i felt that there was never any proof as when i saw these people, all you had to do, was a little hand grip, which I could do! The only evidence they witnesed was my severe balance and co-ordination problems which they referred to as vertigo. Over the years, i have been so confused and if i'm honest, upset. But, having looked at a few sites, i have realised now, that it is possible to feel so desparately ill one day or week/weeks and in the next couple of hours/days/weeks, can feel so normal as well. Hey ho, at this moment today, my symptoms are just starting to calm down from moving about too much this morning, my hands hurt like hell using this keyboard, through stiffness and weakness, but it is helpful reading about others who are the same as me.... and i have not imagined it.... let us see what tomorrow brings on.

I would also say, make the very best of your good days.