Posts - Ataxia UK | HealthUnlocked

Ataxia UK

4,140 members•4,725 posts

All posts for February 2024

Do you or someone you know have a diagnosis of Autosomal Recessive Spinocerebellar Ataxia Type-17?

If you or someone you know has a genetically confirmed diagnosis of Autosomal Recessive Spinocerebellar Ataxia Type-17 (SCAR17), you could take part in a new...

If you or someone you know has a genetically confirmed diagnosis of Autosomal Re...

Irmmy

•1 year ago

1 Reply

Question to the collective

As mentioned previously, I was diagnosed (Prof H/Sheffield) as having the SCA7 version of Ataxia in 2014. I was put on a tablet,( DANTROLENE) that has been...

As mentioned previously, I was diagnosed (Prof H/Sheffield) as having the SCA7 ...

Butcherpete

•1 year ago

1 Reply

Temperapedic foam or temperapedic foam hybrid with encased coils, that is the question

I need to help someone replace his mattress. He does have ataxia with mild, hemiballistic movement, that is not too bad. He may start out in supine, but then...

I need to help someone replace his mattress. He does have ataxia with mild, hem...

CHAMOUR

•1 year ago

1 Reply

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Gluten ataxia

I was diagnosed ga last yr but got steadily worse since I have been very careful what I eat ( no cheating ) but worse symptoms

I was diagnosed ga last yr but got steadily worse since I have been very careful...

Tazwaz

•1 year ago

2 Replies

Gluten ataxia

I was told I had ga last year about Nov I started a gf diet I like to know can you get celiac symptoms eith gluten ataxia

I was told I had ga last year about Nov I started a gf diet I like to know can y...

Tazwaz

•1 year ago

3 Replies

Hello

Hi I’ve got sca2 have asked many questions on here and had helpful replies. I use a rollator inside and out all the time. Recently every time I use it I have...

Hi I’ve got sca2 have asked many questions on here and had helpful replies. I us...

weegiz12345

•1 year ago

14 Replies

Rapid Decline - anyone experience this?

I am an 82 year old woman who was diagnosed two years ago with SCA6 which my mother and grandmother also had. For the last two years tho I was dizzy all the...

I am an 82 year old woman who was diagnosed two years ago with SCA6 which my mo...

Hickox

•1 year ago

7 Replies

Millar 69

I am a57 year old man used to work in a fencing firm was as fit as a butcher’s dog before covid started new job before Covid took hold we all went out on ferlo...

I am a57 year old man used to work in a fencing firm was as fit as a butcher’s d...

Pjpuk

•1 year ago

9 Replies

Join the Countdown: Rare Disease Day 2024!

This Rare Disease Day, 29th February 2024, our aim is to highlight how rare conditions are far more common than most people think. This is a fantastic...

This Rare Disease Day, 29th February 2024, our aim is to highlight how rare cond...

Irmmy

•1 year ago

Be the first to reply

menopause and ataxia!!

Partner has sca diagnosed 2007 , patient of Prof Hadjivassiliou at Sheffield. She is now menopausal, which appears to exacerbate sca symptoms at times but has...

Partner has sca diagnosed 2007 , patient of Prof Hadjivassiliou at Sheffield. Sh...

TedTom

•1 year ago

5 Replies

Burning hot feet at night.

I get burning hot feet at night I have to get up a couple of times in a night. My neurologist has been useless I'm not sure if she misunderstood me or just...

I get burning hot feet at night I have to get up a couple of times in a night. M...

carol31271

•1 year ago

21 Replies

5-HTP?

Has anyone tried the supplement 5-HTP for muscle stiffness and low mood?Thanks

penelope2

•1 year ago

Be the first to reply

Are you a carer for someone with ataxia, or simply want to know more about what it means to be a carer?

Our next Carer's support group meeting will be held on 22nd February 2024 from 14:00pm-15:30pm. Come along to our meeting where you'll have a chance to meet...

Our next Carer's support group meeting will be held on 22nd February 2024 from 1...

Irmmy

•1 year ago

Be the first to reply

Skyclarys approved in the EU

The EMA approves the drug Skyclarys® to treat adults with Friedreich’s ataxia in EU countries On 12th February 2024, the European Medicines Agency (EMA)...

The EMA approves the drug Skyclarys® to treat adults with Friedreich’s ataxia in...

wobblybee

•1 year ago

2 Replies

Iceland

Has anybody been on a cruise to Iceland with ataxia it’s just I’m thinking of going towards the end of this year but not sure if I can manage. So if you have...

Has anybody been on a cruise to Iceland with ataxia it’s just I’m thinking of go...

paul456

•1 year ago

6 Replies

PIP query

Hi, does anyone have advice on claiming PIP. I have just been granted my blue badge. Thanks for the advice regarding that. I'm still working, driving,...

Hi, does anyone have advice on claiming PIP. I have just been granted my blue ba...

Poppylove1

•1 year ago

17 Replies

Happy

The happier you are the better you are 😊

paul456

•1 year ago

3 Replies

weight loss

Good morning. My brother has been suffering from SCA1 ataxia for years. At the moment he feeds himself with baby food and smoothies but he is losing a lot of...

Good morning. My brother has been suffering from SCA1 ataxia for years. At the...

michelagvolpe

•1 year ago

4 Replies

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Posts - Ataxia UK | HealthUnlocked

Ataxia UK

All posts for February 2024

Do you or someone you know have a diagnosis of Autosomal Recessive Spinocerebellar Ataxia Type-17?

Question to the collective

Temperapedic foam or temperapedic foam hybrid with encased coils, that is the question

Gluten ataxia

Gluten ataxia

Hello

Rapid Decline - anyone experience this?

Millar 69

Join the Countdown: Rare Disease Day 2024!

menopause and ataxia!!

Burning hot feet at night.

5-HTP?

Are you a carer for someone with ataxia, or simply want to know more about what it means to be a carer?

Skyclarys approved in the EU

Iceland

PIP query

Happy

weight loss

Search posts

Latest poll

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

Topics

Archive