How when were you told You had Ataxia?

[NannyAlli]

what are were your symptoms and does it get worse?

im finding i can not walk and look at the same time.

If im in a shop i have to stop look or i will wobble all over the place This is getting worse

Also who dx you Dr rhummy nero ?

[Hidden]

My first really noticable symptoms were dizziness and staggerring often to one side. My ataxia is a degenerative cerebellar type so its unlikely it will get better. Having said that, I went through five weeks of intensive rehabilitation as a hospital in-patient, which has made a big difference. I now have much better control of my movements. What kind of ataxia do you have? It must be difficult for you not being able to walk and look at the same time.

[NannyAlli]

Oh yes the light head is bad feels like its swimming.

well my MRI scan shows white matter and something to do with the little bit at the back of my brain cellerable or something like that.

I also find it hard to swollow at times.

Im of to see the nero 11th may after 3 yrs of rhummy appointments . I cant do toe to toe and close my eyes i fall over. list goes on .

i was wondering the stages of this.? Have u any idea ?i see some ppl stage 8 am very confussed with all this atm just trying to find out as much as possibale x

[nana23]

hi, i can totally agree on not being able to look where i am going while walking as i was having to watch my feet, to make sure they were where i wanted them to be lol. my head feels like it is underwater most of the time, that weird sensation when you swim underwater but can hear the echo of whats going on around you. i also have difficulty swallowing at times, and a very dry mouth all the time.

not entirely sure on which ataxia i have as my tests have been sent to italy and i have been told it could be years before they are back :(.

all of the above symptoms came on within the space of 18 months, i have to use a wheelchair when out and about as apart from dizziness, i also suffer from numbness in my legs and feet.

hope some of this helps, i know how hard to grasp ataxia can be but just remember its not the end of the world and keep smiling.

i have had some really stupid people come over and talk to me like i'm a baby, cos i'm in my chair and sometimes i get dirty looks etc, advantage of being in a chair - i can get away with sticking my tongue out at them, shouting if they are really rude etc and no one gives it a second thought lol x

[Hidden]

I'm sure the stages of ataxia differ from person to person and so can the symptoms. The type of ataxia you have sounds to me to be of a 'sensory' nature, (not being able know well enough where your body is in space). Hopefully someone will be able to explain to you in better detail (and myself) as I'm not entirely sure and don't want to lead you down the wrong path.

[HarryB Administrator]

Hi NannyAlli

It sounds like you are going through a horribly confusing time at the moment Have you been told by your neurologist that you have an idiopathic (unknown cause) cerebellar ataxia or have you been told a more specific diagnosis i.e. what kind of ataxia you have? One more question...where do you go to see your neurologist?

HarryB

[jurgen]

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