Posts - Ataxia UK | HealthUnlocked

Ataxia UK

4,084 members•4,658 posts

All posts for August 2019

Biting

Hi Does anyone else have a problem with biting their front lip or inside of their cheeks when eating? I'm always biting myself when eating. Is this another...

Hi Does anyone else have a problem with biting their front lip or inside of the...

weegiz12345

•5 years ago

29 Replies

Ataxia centre Appointment

I have got a 1st appointment at London Ataxia centre. Diagnosed with SCA unknown type in December last year, SCA 3 in family history. What should I expect at...

I have got a 1st appointment at London Ataxia centre. Diagnosed with SCA unknow...

Pussycat1

•5 years ago

9 Replies

Lanyard scheme for Hidden Disabilities

https://inews.co.uk/news/health/sunflower-lanyard-scheme-hidden-disability-explained-meaning-how-get-one/

https://inews.co.uk/news/health/sunflower-lanyard-scheme-hidden-disability-expla...

wobblybee

•5 years ago

4 Replies

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Ataxia. Muscle pain

Hi all just wondering if anyone has any ideas what this could be, or having it themselves? I have idiopathic C/A, my mobility is very limited so I don’t get...

Hi all just wondering if anyone has any ideas what this could be, or having it t...

Legs-alive

•5 years ago

13 Replies

Wing Walk

I've now now done it! 😁 I raised £1500 for Ataxia We had good weather in Cirencester yesterday. The hardest part was climbing up the wings of the plane. The...

I've now now done it! 😁 I raised £1500 for Ataxia We had good weather in Ciren...

Staggy1

•5 years ago

17 Replies

Watering and itchy Eyes

Does anyone having watering itchy eyes? What the precautions/ treatment have been are being taken care of? pls. revert.

Does anyone having watering itchy eyes? What the precautions/ treatment have bee...

kuchee

•5 years ago

3 Replies

What is the difference between Multiple Scirosis and Cerebellar Ataxia ?

Can someone tell me the difference ? Cerebellar Ataxia is a form of ataxia originating in the cerebellum cause by Multiple Scirosis ? Am I correct ?

Can someone tell me the difference ? Cerebellar Ataxia is a form of ataxia orig...

Faith3012

•5 years ago

7 Replies

Eye nerve's

Hi,my eye nerve's on top my life on both eyes keep twitching , anyone else have this happen 😉

Hi,my eye nerve's on top my life on both eyes keep twitching , anyone else have ...

margieboo22

•5 years ago

4 Replies

No pain versus pain

Hi all, I find that most days I don't really feel if I bump myself etc. I often have bruises and I have no idea how I did them. Then other days I can't even...

Hi all, I find that most days I don't really feel if I bump myself etc. I often ...

ww-wibblywobbly

•5 years ago

14 Replies

CONFUSED with MY diagnoses/ Cerebral Ataxia.

I was diagnosed by a senior neurologist in 2015 for SCA after observing my symptoms of imbalance, coordination and walking examined etc and was prescribed...

I was diagnosed by a senior neurologist in 2015 for SCA after observing my symp...

kuchee

•5 years ago

8 Replies

Dyskinesia (slow motion movement) Vs Ataxia

Hi folks, I am doing slow motion things as fast move isn't possible any more. It makes me falling if i do. And top of it my lower back lumber space is quite...

Hi folks, I am doing slow motion things as fast move isn't possible any more. It...

kuchee

•5 years ago

12 Replies

Vertigo

Siblings, having strong vertigo and is unable to stand and walk without holding walls. Help needed to gt some strengths for legs and vertigo. Please!

Siblings, having strong vertigo and is unable to stand and walk without holding ...

kuchee

•5 years ago

11 Replies

Dizziness!!

I feel dizzy when specially wake up from asleep, move head. The most of the time it’s when I’m stood up I can’t mobile properly feel like my heads not catching...

I feel dizzy when specially wake up from asleep, move head. The most of the time...

kuchee

•5 years ago

6 Replies

understanding what you read

Hello everyone, I have not written for ages, but being following the posts. I have a question ....I don't know if it is related to ataxia or not ... Maybe any...

Hello everyone, I have not written for ages, but being following the posts. I ha...

Amynah

•5 years ago

1 Reply

Where you live

Hi Ted ,I live in Adelaide but come from Aberdeen.

Liamtitchie

•5 years ago

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Writing posts

Hi everyone Can I make a suggestion? When we write a post it would be very interesting to know where 'members come from. I for example live in Berkshire but...

Hi everyone Can I make a suggestion? When we write a post it would be very inte...

tedjohnson

•5 years ago

20 Replies

Parents of children with ataxia: request for a case study

Hi all! I hope you are well. For those of you who have children with ataxia, would you be interested in sharing their story of diagnosis, or mis-diagnosis? Is...

Hi all! I hope you are well. For those of you who have children with ataxia, wou...

Hidden

•5 years ago

5 Replies

Mobility Scheme

Hi all, Is there anyone who can tell me how to get on the mobility scheme if you are retired and not in receipt of the benefits they say you should be in...

Hi all, Is there anyone who can tell me how to get on the mobility scheme if you...

Jacqui-A

•5 years ago

12 Replies

Vitamin B (Thiamine)

Thinking to start vitamin B complex. pls. share your experience of using it. My legs and limb are wobbling while walking but i feel improvement in my balance...

Thinking to start vitamin B complex. pls. share your experience of using it. My ...

kuchee

•5 years ago

8 Replies

Ataxia UK , chance to win raffle.

This might be of interest? Click on the link to find out about this, "The Chance2Win raffle isn’t just a donation, it’s the chance for you to win a cash prize...

This might be of interest? Click on the link to find out about this, "The Chance...

pinjem

•5 years ago

Be the first to reply

To test or not

Hello! I did join 2 years ago, but life got busy and I did not post. A sibling had ataxia since her thirties and lately found out it is a genetic ataxia. I...

Hello! I did join 2 years ago, but life got busy and I did not post. A sibling...

Rhiny99

•5 years ago

14 Replies

Frozen Shoulder

Sibling 47, is having severe frozen shoulder after she fell. It was 2-3 weeks before and now even she is feeling freezing in her both shoulders. Its really...

Sibling 47, is having severe frozen shoulder after she fell. It was 2-3 weeks be...

kuchee

•5 years ago

8 Replies

Neurophysiotherapist

I am desperate to find a Neurophysiotherapist for our son who has DRPLA (rare form of SCA). We live in Essex, UK and are willing to travel to see the right...

I am desperate to find a Neurophysiotherapist for our son who has DRPLA (rare fo...

majajefferies

•5 years ago

8 Replies

Results of a survey about Genome Sequencing from the Genetic Alliance

https://www.geneticalliance.org.uk/wp-content/uploads/2019/07/Patient-Experience-100000GP.pdf

https://www.geneticalliance.org.uk/wp-content/uploads/2019/07/Patient-Experience...

wobblybee

•5 years ago

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Bathmat

Bathmat please? OK I try to have a bath most nights. It is a real challenge because it is upstairs (and I hate stairs). I have a child’s bathmat which has...

Bathmat please? OK I try to have a bath most nights. It is a real challenge bec...

Litty

•5 years ago

11 Replies

IQORO

Their web site gives a long list of conditions it claims to cure, almost too good to be true. I tend to believe that if something sounds too good to be true,...

Their web site gives a long list of conditions it claims to cure, almost too goo...

robo1

•5 years ago

7 Replies

In need of a new wheelchair! Please help me

PLEASE PLEASE DONATE It would mean a lot to me if everyone could keep sharing and donating! Even if it is a small amount everything helps! Hello, I have...

PLEASE PLEASE DONATE It would mean a lot to me if everyone could keep sharing ...

Baza97

•5 years ago

1 Reply

LEG STRENGTH

I am loosing my leg muscles weaken in progression and it is badly causing imbalance while walking or standing. Jumping strength from muscles is totally gone....

I am loosing my leg muscles weaken in progression and it is badly causing imbala...

kuchee

•5 years ago

9 Replies

Positive experience with anti-depressants

Recently I have had a very positive experience with taking an anti-depressant and I would like to pass the information on. For the last 2 months I have been...

Recently I have had a very positive experience with taking an anti-depressant an...

ConantheLibrarian

•5 years ago

6 Replies

Who wants a free book?

Two conditions though: 1/ UK-only (my postage costs); 2/ You must have some connection to ataxia - either as a patient, carer or supporter (although the fact...

Two conditions though: 1/ UK-only (my postage costs); 2/ You must have some conn...

AtaxiaBookFairy

•5 years ago

8 Replies

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Posts - Ataxia UK | HealthUnlocked

Ataxia UK

All posts for August 2019

Biting

Ataxia centre Appointment

Lanyard scheme for Hidden Disabilities

Ataxia. Muscle pain

Wing Walk

Watering and itchy Eyes

What is the difference between Multiple Scirosis and Cerebellar Ataxia ?

Eye nerve's

No pain versus pain

CONFUSED with MY diagnoses/ Cerebral Ataxia.

Dyskinesia (slow motion movement) Vs Ataxia

Vertigo

Dizziness!!

understanding what you read

Where you live

Writing posts

Parents of children with ataxia: request for a case study

Mobility Scheme

Vitamin B (Thiamine)

Ataxia UK , chance to win raffle.

To test or not

Frozen Shoulder

Neurophysiotherapist

Results of a survey about Genome Sequencing from the Genetic Alliance

Bathmat

IQORO

In need of a new wheelchair! Please help me

LEG STRENGTH

Positive experience with anti-depressants

Who wants a free book?

Search posts

Latest poll

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

Topics

Archive