Ataxia UK
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Hi im a newbie

Hi everyone

You do not know how nice it is to meet other people with this condition.

I've been told I have ataxia but don't know which type! Im seeing a Neuro psychiatrist type person on Tues for full assessment. My worst side effect is the shakes,sometimes they mild sometimes they seem quite violent. I get these wierd seizures in my sleep and 4 times now actually fallen out of bed! Most days I have no concept of day date time location.

Just a guess but it's probably all related to my liver disease??

Any hints tips coping stratogies greatly appreciated.X

5 Replies

Dear JR2009, First of all, a HUGE welcome to this site! I live in the USA, State of Michigan. I have Sporadic Cerebellar Ataxia (unknown cause, progressive, symptoms 24/7), diagnosed thirteen years ago, although I had very minor symptoms starting about eight years before diagnosis. I do exercises for strength and balance (holding onto something sturdy or laying on the floor), as well as eating as healthy as possible (lots of fresh veggies and fruit). I hope you get the answers you so deserve at your appointment! My best to you..., ;o)


Hi me also newbee although feel old..I am same situation awaiting an MRI and asked to be referred to Imperial college (my brother researched who dealt with my actual start of this blinking thing)I don't wish to know particularly but this sure helps knowing people in same boat..Or canooe minus any paddles or crutches.My memory and writing is the wotst thing short term writing adding up getting up remembering anything!Tremmor I had years it's now no worse(but with eyes shut it is according to GP?I can't touch nose with finger one side I even forgot whatside?Its wallkimg into stuff ether people or knocking everything in my path other if I fall I fall?A fractured ankle more broken toes and ripped of lots of nails without even realising?


Sweating all night doesn't help I have constant thirst ( hypernatrima since..And sweat all night pee all the night tried limit drink..Was on 3 cups a day no more it's more like torture than life an existence.I got my sparkle back if not my brain and body!Sometimes it feels like the night is the day I have been known to nod of a 4 am then be woken at 5.45am by a small boy.Depends go with to flow my sleep is slightly better but I am shattered feel like 99 when just 40.Keep on tracking and kick a few people (or fire a nerf gun...)


Welcome to this forum! We are here to share and support each other! I have fallen out of bed, too, so I can relate. I've had liver disease, seizures etc., but my balance problems, related to diagnosed Ataxia and diagnosed PD are what, I think, had me falling out of bed. Hope you are doing better and get an answer from a qualified medical professional, that can explain some of your difficulties. Wishing you the best!

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Thank you for replying and the support.X


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