Intro: Hello people,I'm ray from cardiff. - Ataxia UK

Ataxia UK

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Rayy profile image
Rayy
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Hello people,I'm ray from cardiff.

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Rayy
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7 Replies
wobblybee profile image
wobblybee

Hi Ray😊welcome

I live near Newcastle, and I've been told I have SCAR8😊xB

Rayy profile image
Rayy in reply to wobblybee

I was diagnosed last year with sac6 but knew for a long time things weren't right.

I was born in Newcastle and moved away when I was four.

Hi Ray

I'm Debbie I live near Brynmawr.

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Rayy in reply to

Hi Debbie nice to hear from you,tell me about you.

Hi Rayy I Dont know if I have Ataxia or not but I had the first stroke some years ago I was totally oblivious to it.

 The second happened while I was asleep so didn't know until the following morning I woke up with Double vision and a little weakness I was very lucky, The Double vision has now been corrected.

I've had 2 TIA'S again I was asleep for the first one the second happened in the shower totally paralysed and couldn't speak for a little while so thank god my Husband was home  he got me out and rang for an Ambulance.

The reason I started using this forum is because im getting constant Dizziness, loss of balance, Memory problems and I am unbalanced even when sat  down and have been looking for some information  sort of relating to the symptoms I have as every where else I have tried only seems to relate to Vertigo which after seeing The ENT Doctor I now know  defiantly isn't causing my symptoms its Damage caused by the Stroke/TIA .

This Morning I made an appointment to see my GP again as he doesn't know that the symptoms have got worse and im not due to see a specialist until the end of the month and I must admit im starting to get a little concerned now and want some answers as to what is causing the symptoms.

Sorry for the long reply :)

Rayy profile image
Rayy in reply to

I can't imagine how frightened you must have been.I also have problems with dizziness (it's like the symptoms are never ending) I feel dizzy and sick if I walk in one direction and look in another direction or look up when standing.who is your neurologist and which hospital do you attend.cos when I first saw Dr he didn't seem as though he was very surprised,asked about my past drinking ,sort of insinuated that I knew what was causing my symptoms.but I have never been much of a drinker.after about 4 or 5 appointments he couldn't find a cause he referred me to a Dr who knew more and what a difference,I learned more after one visit than I did from seeing the first Dr several times.such a massive difference,a lot younger but took the time to listen and explain things.that's the reason I asked about your Dr cos it makes a massive difference having a good one.so if your not happy with your current Dr don't be like me,ask for a different one.cos at the end of the day your the one with worrying things happening to you.the best advice I can give you is see what the Dr is like and what he says.even having a diagnosis is a step forward.

Sorry about essay,a minute to read 30 minutes to write.

To be honest the only stroke that frightened me was the last one I was oblivious to the first and asleep for the others but the last one I was awake for and that scared the hell out of me at the time, not nice at all.

I know the feeling with the Dizziness, Balance etc its like a downward spiral at the moment so cant wait to see the GP again.

Do you find exercise makes your legs feel really heavy ? Mine do , I know im getting old but really! im not that old yet :)

As for the specialist im not sure if she is a Neurologist on the letter it said Elderly care which really made me laugh , any way I rang to say there must be some mistake and was assured that she deals with different types of conditions but the letters always say Elderly Care so we shall see ?

That's partly why I  want to go back to see my GP I want to make sure I am going to see the correct DR.

I shall take your advice though and if I don't find her any good I will ask to see a different one I want answers not to be fobbed off.

You didn't send an essay as a reply I appreciate the reply, Thank you

Just saying that if I ever reply and it doesn't make sense I apologise in advance :).