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Ataxia UK

4,110 members•4,689 posts

All posts for July 2018

It came as a shock

One minute all systems working then a semi-collapse and partial recovery in June 2017 and the news of a degenerated cerebellum. Age 73 and a life of sport,...

One minute all systems working then a semi-collapse and partial recovery in Jun...

chrismor

•6 years ago

17 Replies

New Diagnosis

Hi everyone I’m new here and have recently been told I have SPG7 Yesterday I saw a geneticist who has referred me to her...

Hi everyone I’m new here and have recently been told I have SPG7 Yesterday I sa...

Glanawmor

•6 years ago

2 Replies

VERTIGO

Hi everyone, Anyone taking BETHASTINE/BETARSEC for vertigo? Does it work for vertigo? I’m having vertigo since 2016 and, usually it last for 1/2 months....

Hi everyone, Anyone taking BETHASTINE/BETARSEC for vertigo? Does it work for v...

UmmuR

•6 years ago

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I’m new here.

Hi,I’m new here and have symptoms of ataxia possibly due to gluten as have been coeliac for about ten years and have a gluten free diet.Having problems with...

Hi,I’m new here and have symptoms of ataxia possibly due to gluten as have been ...

Hidden

•6 years ago

4 Replies

Fatigue

I am 74 years old and when I was 68 I was diagnosed with 'late onset SCA' I have accepted the presence of the condition and its inevitable progress, probably...

I am 74 years old and when I was 68 I was diagnosed with 'late onset SCA' I have...

Piero

•6 years ago

17 Replies

Stop work at 55

Hi. A question for you financial experts... I have had SCA2 for over 5 years now and things are getting slowly (thankfully!) more difficult. So I am being...

Hi. A question for you financial experts... I have had SCA2 for over 5 years now...

RobertV

•6 years ago

3 Replies

SCA Type 6 & CBD oil

Hi.... I have Spinocerebellar Type 6 heredited from my biological mother.... I am looking for anyone that has same condition ideally same type also so can...

Hi.... I have Spinocerebellar Type 6 heredited from my biological mother.... I a...

Magicalwomanz

•6 years ago

21 Replies

More balanced

Diet and vitb12 injections working? I’ve been following a gluten free vegan diet( Anthony Williams diet) for 4 months now and also had the first of my vit...

Diet and vitb12 injections working? I’ve been following a gluten free vegan di...

Happyfacexx

•6 years ago

8 Replies

Ataxia or not?

My wife has had lifelong epilepsy since birth. She has had 2 brain operations to remove a Hypothalamic Hamartoma and has suffered the effects of many anti...

My wife has had lifelong epilepsy since birth. She has had 2 brain operations to...

Zombi

•6 years ago

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Nasty computer scams

Hi everyone A fellow Ataxian has had one of those nasty-----send $3000 to me or I will damage your computer email etc etc. These can be very worrying but...

Hi everyone A fellow Ataxian has had one of those nasty-----send $3000 to me or ...

tedjohnson

•6 years ago

3 Replies

Leicester and leicestershire

Good morning Leicester are having there 1/4 ataxia meeting on 26th July all welcome at Local hero Aylestone Rd leicester

Good morning Leicester are having there 1/4 ataxia meeting on 26th July all welc...

xray25

•6 years ago

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Ataxia

HI I am new to this, wondering if there is a special diet or vitamins that help Cerebral Ataxia?

HI I am new to this, wondering if there is a special diet or vitamins that help ...

abster34

•6 years ago

10 Replies

Tests

I’m so fed up of having test after tests after test, is it my choice wether I decide to have them or not? I do realise it’s all for my benefit but after 9...

I’m so fed up of having test after tests after test, is it my choice wether I de...

Legs-alive

•6 years ago

9 Replies

Keep going.

I am about three weeks off seventy years young, and have Genetic late onset cerebellar ataxia, previously I used to take the dogs (two springer spaniels )...

I am about three weeks off seventy years young, and have Genetic late onset cere...

wildstyler

•6 years ago

1 Reply

Different meds

Hi all I have just come off acetazolamide and spent six weeks going on topirimate.has anyone else been on this medication before? Not really enjoying the side...

Hi all I have just come off acetazolamide and spent six weeks going on topirimat...

Scrunch1974

•7 years ago

9 Replies

Any words of advice welcome

Hello, I have my pip assessment in 5 days time and am pretty nervous about it, any words of advice would be greatly appreciated, also has anyone ever recoded...

Hello, I have my pip assessment in 5 days time and am pretty nervous about it, a...

Happyfacexx

•7 years ago

20 Replies

G-CSF Drug Trial for FA at Bristol Hospital

I am currently 2 weeks into the 3 week trial for the drug, G-CSF, at Southmead Hospital in Bristol and am doing a call-out to anyone who may be able to take...

I am currently 2 weeks into the 3 week trial for the drug, G-CSF, at Southmead H...

Tiggywinkles

•7 years ago

9 Replies

2 year old toddler with Ataxia

Hi - I have a 2 year old who became very unwell almost 3 months ago. She lost her ability to sit stand speak and developed nystagmus. This happened while we...

Hi - I have a 2 year old who became very unwell almost 3 months ago. She lost he...

Godblessusall

•7 years ago

5 Replies

Eye problems

I have just had an annual visit to the opticians who suggested I had two separate pairs of glasses.I have had bi-vocals for the last few years and feel that...

I have just had an annual visit to the opticians who suggested I had two separat...

Trinity48

•7 years ago

6 Replies

Cerebella ataxia

Does anyone use cbd oil with thc in it to try and help with the ataxia and has it worked?

Does anyone use cbd oil with thc in it to try and help with the ataxia and has i...

Kirsty34

•7 years ago

9 Replies

Warped Body Clock. Please help..

Hi All. I have had ILOCA for about ten years now but only had a definite diagnosis in December 2017 at Oxford. My condition has deteriorated since November...

Hi All. I have had ILOCA for about ten years now but only had a definite diagnos...

Woodturnerman

•7 years ago

3 Replies

Heat and my ataxia

Temperatures of 27 C degrees and higher seem to greatly worsen my ataxia - my first experience was in 32 degree C weather and I was walking alone and could...

Temperatures of 27 C degrees and higher seem to greatly worsen my ataxia - my fi...

Christmaslady

•7 years ago

10 Replies

Ataxia medication

Hi is anyone on a medication called CellCept mycophenolate mofeti?

boxerattims

•7 years ago

4 Replies

do you know trehalose ?

I was diagnosed with SCA3 some 4 years ago,and yet I am 25 yeas old, recently I have found a medicine named trehalose produced by Bioblast Pharma Ltd can cure...

I was diagnosed with SCA3 some 4 years ago,and yet I am 25 yeas old, recently I ...

4ever2gether

•7 years ago

9 Replies

Very Confused

Hi all, My neurologist says I have CA borderline MSA and gives me sad looks, He says to exercise but doesn't think it will help me much..But my PT swears...

Hi all, My neurologist says I have CA borderline MSA and gives me sad looks, ...

neta

•7 years ago

13 Replies

Trinucleotide repeats

Hi, Have you had a blood test for trinucleotide repeat conditions (there are 13 of them, the most common one is Huntingtons, our son has DRPLA)? Maja

Hi, Have you had a blood test for trinucleotide repeat conditions (there are 13 ...

majajefferies

•7 years ago

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Liver Damage

Hello, I am looking for some advice please. I was diagnosed in 2011 with Ataxia but seems like I have had it from when I was born. I am being treated for liver...

Hello, I am looking for some advice please. I was diagnosed in 2011 with Ataxia ...

wendygirl

•7 years ago

6 Replies

Which Neurologist

For years I have been going to the Ataxia Centre in London to see DR.Giunti once a year. There is no cure for my condition so it is just to monitor this. But I...

For years I have been going to the Ataxia Centre in London to see DR.Giunti once...

klazien

•7 years ago

16 Replies

Is it safe to take betahistine 16mg tablets?

Hi all I have been diagnosed with labyrinthitus about 1 week after suffering for about 2 months it all started when I woke up one morning and I was laying down...

Hi all I have been diagnosed with labyrinthitus about 1 week after suffering for...

V1978

•7 years ago

1 Reply

Patrick moloney

Hi im ive been diagnosed with ataxia brain damage i was i had a fall some 7 years ago struck my head ct scan was clear but still had pain in my head i took a...

Hi im ive been diagnosed with ataxia brain damage i was i had a fall some 7 ye...

Killarney

•7 years ago

3 Replies

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Posts - Ataxia UK | HealthUnlocked

Ataxia UK

All posts for July 2018

It came as a shock

New Diagnosis

VERTIGO

I’m new here.

Fatigue

Stop work at 55

SCA Type 6 & CBD oil

More balanced

Ataxia or not?

Nasty computer scams

Leicester and leicestershire

Ataxia

Tests

Keep going.

Different meds

Any words of advice welcome

G-CSF Drug Trial for FA at Bristol Hospital

2 year old toddler with Ataxia

Eye problems

Cerebella ataxia

Warped Body Clock. Please help..

Heat and my ataxia

Ataxia medication

do you know trehalose ?

Very Confused

Trinucleotide repeats

Liver Damage

Which Neurologist

Is it safe to take betahistine 16mg tablets?

Patrick moloney

Search posts

Latest poll

How long have you or your relative/friend been diagnosed with ataxia?

Topics

Archive