Posts - Ataxia UK | HealthUnlocked

Ataxia UK

4,110 members•4,689 posts

All posts for October 2021

Befriending Volunteers Wanted

Hi Everyone! Do you have an hour a week to spare and love to chat? We're looking for some new befriending volunteers for our Friends Connect service where...

Hi Everyone! Do you have an hour a week to spare and love to chat? We're lookin...

Anastasia-Ataxia-UK

•3 years ago

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Feeling Hot

I’ve noticed over the last few months I get really hot when doing the slightest little thing I’m especially hot at night even though no heating is on and...

I’ve noticed over the last few months I get really hot when doing the slightest ...

paul456

•3 years ago

9 Replies

Does anyone have vision problems like movement of everything when you are walking and slow focusing? I have something called CANVAS Ataxia

I have hereditary Ataxia called CANVAS and have problems with vision especially when I am moving also slow focusing apart from having to walk with 2 walking...

I have hereditary Ataxia called CANVAS and have problems with vision especially ...

boxerattims

•3 years ago

9 Replies

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SCA2?

Hello, I’ve recently been diagnosed with SCA2. My CAG repeats were 37. I’m 51 and only have minimal symptoms. I’m worried about my 20 and 22 year old...

Hello, I’ve recently been diagnosed with SCA2. My CAG repeats were 37. I’m 51 ...

Shakedown

•3 years ago

15 Replies

Testing for this gene

Hello, Does anyone know where to test (pref. anonymously) through a mail order lab? (In USA) ?

Hello, Does anyone know where to test (pref. anonymously) through a mail order l...

Mav123

•3 years ago

6 Replies

Standards of Clinical Care in Ataxia

🙂 I just watched an interesting, easy to understand YouTube presentation on behalf of the National Ataxia Foundation. It was given by Dr Theresa Zesiewicz. It...

🙂 I just watched an interesting, easy to understand YouTube presentation on beh...

wobblybee

•3 years ago

6 Replies

MRI

I am having an MRI this week can anyone tell me what to expect? I have had MRIs on my knees before but not my brain/spine.

I am having an MRI this week can anyone tell me what to expect? I have had MRIs...

Paper2021

•3 years ago

40 Replies

Does ataxia cause digestive pr

I've got ataxia also taking HRT suffering whit belly pain and lots of burping wonder if its connected

I've got ataxia also taking HRT suffering whit belly pain and lots of burping wo...

Tazwaz

•3 years ago

11 Replies

Diet

Hi all Does anybody follow a certain diet For ataxia? Thanks

Voice1

•3 years ago

7 Replies

EA2

Hi I suffer with EA2 and in the mornings I get jelly legs and its the hardest thing about my condition. Does anyone else suffer with jelly legs? If so does...

Hi I suffer with EA2 and in the mornings I get jelly legs and its the hardest th...

Tottenham0102

•3 years ago

12 Replies

Late Walker Discovery

To all those who like myself may have been reluctant to use a walker ..... get one! After many machismo fuelled years of perilous tottering, eventually fearing...

To all those who like myself may have been reluctant to use a walker ..... get o...

Piero

•3 years ago

7 Replies

More positive research

https://www.streetinsider.com/Business+Wire/Blade+Therapeutics+Announces+Publication+of+Preclinical+Evidence+Supporting+Neuroprotective+Effects+of+Proprietary+C

https://www.streetinsider.com/Business+Wire/Blade+Therapeutics+Announces+Publica...

nycgeordie

•3 years ago

3 Replies

Wheel Chair

I had to contact Sheffield Ataxia Centre as my condition rapidly deteriorated. They told me to start using my wheel chair at work. The drug I was on is no...

I had to contact Sheffield Ataxia Centre as my condition rapidly deteriorated. T...

KiwiBob

•3 years ago

9 Replies

Promising research

https://www.qstatebio.com/news/q-state-biosciences-announces-new-therapeutic-programs-targeting-neurodegeneration

https://www.qstatebio.com/news/q-state-biosciences-announces-new-therapeutic-pro...

nycgeordie

•3 years ago

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Episodic ataxia

Hi I have episodic ataxia type 2 and I was seeing if anyone else suffered with it and if you do if you had any tips for me to help deal with it?

Hi I have episodic ataxia type 2 and I was seeing if anyone else suffered with i...

Tottenham0102

•3 years ago

14 Replies

Lions Mane

I have SCA7/r43 and been testing Lions Mane about a decade now.' For me it affects like this: after 3-4 days after the dose the balance gets very significally...

I have SCA7/r43 and been testing Lions Mane about a decade now.' For me it affec...

Tommi_

•3 years ago

4 Replies

New AOA2 Facebook group

Hi all, in case you haven't seen in other media or feeds, a closed Facebook group has been set up for those affected by AOA2. To ask to join please click on...

Hi all, in case you haven't seen in other media or feeds, a closed Facebook grou...

cocofrance

•3 years ago

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Question

As really lucky people who suffer ataxia do you suffer more by doing too much or too little? I suffered from fatigue once, it was on the 25th December 1981...

As really lucky people who suffer ataxia do you suffer more by doing too much or...

paul456

•3 years ago

5 Replies

FA and Omaveloxolone

Copied from www.ataxia.org.uk

wobblybee

•3 years ago

1 Reply

Considering Giving up work

Hi all I have FA and have had a couple off falls hitting my head quite hard (luckily not done any lasting damage ) , I retrained and came off ESA around 5...

Hi all I have FA and have had a couple off falls hitting my head quite hard (luc...

LeeMorris

•3 years ago

12 Replies

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Posts - Ataxia UK | HealthUnlocked

Ataxia UK

All posts for October 2021

Befriending Volunteers Wanted

Feeling Hot

Does anyone have vision problems like movement of everything when you are walking and slow focusing? I have something called CANVAS Ataxia

SCA2?

Testing for this gene

Standards of Clinical Care in Ataxia

MRI

Does ataxia cause digestive pr

Diet

EA2

Late Walker Discovery

More positive research

Wheel Chair

Promising research

Episodic ataxia

Lions Mane

New AOA2 Facebook group

Question

FA and Omaveloxolone

Considering Giving up work

Search posts

Latest poll

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

Topics

Archive