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Ataxia UK

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I have a very wobbly gait

Hello to all members of the ataxia community , I actually was not diagnosed with ataxia in a classical sense, because my brain MRI did not show any...

Hello to all members of the ataxia community , I actually was not diagnosed w...

Seagull_48

•1 year ago

18 Replies

Thoughts

I’m wondering if it’s a rational approach for Ataxians to ‘forget’ about drugs and medications for a while, and instead focus on the various therapies...

I’m wondering if it’s a rational approach for Ataxians to ‘forget’ about drugs a...

chelpet

•2 years ago

8 Replies

Has anyone used 'Balance Belt' or Biofeadback Device?

Hi all,I was wondering if anyone had used a device like a 'Balance Belt' or other Biofeedback Device? To explain, I found a device called a Balance Belt...

Hi all,I was wondering if anyone had used a device like a 'Balance Belt' or othe...

Tackeshi

•2 years ago

8 Replies

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Coenzyme Q10 and Spinocerebellar Ataxias

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4674072/

skyasll

•2 years ago

1 Reply

Oral trehalose maybe helpful for patients with spinocerebellar ataxia 3 and should be better evaluated

This is a research report on the treatment of spinal ataxia with oral seaweed sugar....

This is a research report on the treatment of spinal ataxia with oral seaweed su...

skyasll

•2 years ago

3 Replies

Phase II/III trial of troriluzole in spinocerebellar ataxia

Melissa Beiner, MD, Biohaven Pharmaceuticals, Inc., New Haven, CT, discusses the findings of a Phase II/III clinical trial (NCT02960893) of troriluzole in...

Melissa Beiner, MD, Biohaven Pharmaceuticals, Inc., New Haven, CT, discusses the...

skyasll

•2 years ago

3 Replies

I have seen some protocols in the literature for the treatment of SCA with buspirone.

I have seen some protocols in some Chinese literature for the treatment of SCA with buspirone. Buspirone: (Increase to 5mg twice a day in week 2 and up to 10mg...

I have seen some protocols in some Chinese literature for the treatment of SCA w...

skyasll

•3 years ago

2 Replies

l am a newcomer, and i want to know all about SCA2、ataxia and tartarine.

我来自中国，于 2021 年 8 月被诊断出患有 SCA2-43。我一直在按照 Joe Peck 先生的建议进行锻炼和服用补充剂。现在病情没有明显进展。我想听听您对丁螺环酮和酒石（一种于 2000 年在日本注册的用于治疗共济失调的药物）的看法。有关欧洲地区 SCA 的最新更新？

我来自中国，于 2021 年 8 月被诊断出患有 SCA2-43。我一直在按照 Joe Peck 先生的建议进行锻炼和服用补充剂。现在病情没有明显进展。我想听听...

skyasll

•3 years ago

14 Replies

Do you have views on newborn genetic testing for the ataxias?

Do you have views on whether it's right to test for conditions that don't have cures, such as the ataxias? It's quite contraversial among some ataxia...

Do you have views on whether it's right to test for conditions that don't have c...

SueMillman

Partner•3 years ago

4 Replies

Does someone with SCA1 qualify for NHS Continuous Health Care funding

Hi, My mother has SCA1. She is unable to walk and so uses a wheel chair all the time. Her speech is extremely slurred. She seems to be getting confused too....

Hi, My mother has SCA1. She is unable to walk and so uses a wheel chair all the ...

Lynn2631

•3 years ago

13 Replies

New to the site and looking for people's lived experiences

Hi, I recently had a very unsatisfactory neurology assessment which concluded after about 20 minutes and did not even include an assessment of my gait. I...

Hi, I recently had a very unsatisfactory neurology assessment which concluded af...

Frodocat1

•3 years ago

14 Replies

for those with restricted opportunities for exercising

Is an under desk bike pedal exerciser helpful?

Bach4K88

•3 years ago

4 Replies

Covid & disability. Not everyone can wear masks

Not everyone you see can wear masks. Disability comes under various disguises & a huge umbrella.

Not everyone you see can wear masks. Disability comes under various disguises & ...

Legs-alive

•3 years ago

3 Replies

Ataxia

If anyone has questions about TMS or ECT, I have had a number of these treatments. Would be happy to answer any questions.

If anyone has questions about TMS or ECT, I have had a number of these treatmen...

BobR47

•3 years ago

23 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

Gluten ataxia

Hi I’m Guy I’ve been suffering with ataxia for years, I recently had a lumbar puncture and endoscopy at Sheffield under Dr Marios he said I have an antibody to...

Hi I’m Guy I’ve been suffering with ataxia for years, I recently had a lumbar pu...

Guyb

•3 years ago

7 Replies

GP re Ataxia

Hello everyone I live in N2 and looking for a sympathetic understanding GP of Cerebellar Ataxia. Would anybody know of such a doctor in North London please ?...

Hello everyone I live in N2 and looking for a sympathetic understanding GP of Ce...

Fortoday

•4 years ago

4 Replies

mobility

I experience slight but permanent deterioration in my mobility with each needle (for whatever reason) that I receive. Apparently, it's due to blood type....

I experience slight but permanent deterioration in my mobility with each needle...

homemaker2000

•4 years ago

1 Reply

Transcranial Magnetic Stimulation (TMS)

I've had idiopathic cerebellar ataxia for a little over a year. Currently undergoing a 10 session ataxia protocol with TMS. Has anybody tried it? More info at...

I've had idiopathic cerebellar ataxia for a little over a year. Currently underg...

BobR47

•4 years ago

3 Replies

SCA 2 update

My name is Vinu Radhakrishnan, I have SCA 2 for the last 6years. I am looking for a good friend to share my thoughts with and discuss ataxia diseases. Thanks

My name is Vinu Radhakrishnan, I have SCA 2 for the last 6years. I am looking fo...

vinupr

•4 years ago

9 Replies

Relationship based query

Hi Everyone, My query is not specifically physical health related. I wanted to know how many people are happily in a relationship with another person? Did you...

Hi Everyone, My query is not specifically physical health related. I wanted to ...

Sherena

•4 years ago

10 Replies

Cerebellar Ataxia Constant falling

After nearly 15 years of mild Cerebellar Ataxia it seems to be getting worse. I'm falling every day. I find that what is causing my fall is that the rubber...

After nearly 15 years of mild Cerebellar Ataxia it seems to be getting worse. I'...

terryzx

•4 years ago

25 Replies

gluten attaxia

Hi I have gluten ataxia,does anyone have aching legs when standing for few minuates

Hi I have gluten ataxia,does anyone have aching legs when standing for few minua...

golfingsue

•4 years ago

7 Replies

My Garden picture .. Suffolk, England

Thanks to Veteran250 Don for telling me how its done, I can share a pic of my garden .. cant get out there yet as hubby has built new steps from living room...

Thanks to Veteran250 Don for telling me how its done, I can share a pic of my ga...

PatsyIpswich

•4 years ago

2 Replies

Support for my lovely Mum

Hi, My 63 year old Mum had a stroke last year caused by a venous anomaly in her brain (very rare!). Is has caused atrophy in her cerebellum and she has been...

Hi, My 63 year old Mum had a stroke last year caused by a venous anomaly in her...

Totoro123

•4 years ago

8 Replies

Sudden Muscle Weakness and falling.

Sudden muscle weakness. I have had a diagnosis of SCA 1 for approx 8 years and initially managed, even working (I'm a nurse). Had lots of support but now...

Sudden muscle weakness. I have had a diagnosis of SCA 1 for approx 8 years and...

adnyl

•5 years ago

6 Replies

Due to see my neurologist but don’t know if they’re doing clinical appointments & unsure wether to ring them or not.

Just after a bit of advice if possible. I absolutely understand how busy the nhs hospital etc are hence why I’m asking a question on here(I’ve also an...

Just after a bit of advice if possible. I absolutely understand how busy the nhs...

Legs-alive

•5 years ago

8 Replies

Roy

Hi.i get emails about what people have posted but only part of it when i click on it i get a black box with a lot of http numbers and letters could you let me...

Hi.i get emails about what people have posted but only part of it when i click o...

Arlo20

•5 years ago

4 Replies

Hyperextended Knee?

Seasons greetings all! Haven't written on here for a while but I do read regularly what everyone else posts. I have a quick question does anyone have or had a...

Seasons greetings all! Haven't written on here for a while but I do read regula...

Sherena

•5 years ago

3 Replies

took me by surprise

I live in an independent living block of flats and try to get out of it for a walk every day. Yesterday the cleaner/temporary warden commented on how much...

I live in an independent living block of flats and try to get out of it for a wa...

springlove

•5 years ago

3 Replies

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Posts - Ataxia UK | HealthUnlocked

Ataxia UK

All things Ataxia UK posts

I have a very wobbly gait

Thoughts

Has anyone used 'Balance Belt' or Biofeadback Device?

Coenzyme Q10 and Spinocerebellar Ataxias

Oral trehalose maybe helpful for patients with spinocerebellar ataxia 3 and should be better evaluated

Phase II/III trial of troriluzole in spinocerebellar ataxia

I have seen some protocols in the literature for the treatment of SCA with buspirone.

l am a newcomer, and i want to know all about SCA2、ataxia and tartarine.

Do you have views on newborn genetic testing for the ataxias?

Does someone with SCA1 qualify for NHS Continuous Health Care funding

New to the site and looking for people's lived experiences

for those with restricted opportunities for exercising

Covid & disability. Not everyone can wear masks

Ataxia

MRI

Gluten ataxia

GP re Ataxia

mobility

Transcranial Magnetic Stimulation (TMS)

SCA 2 update

Relationship based query

Cerebellar Ataxia Constant falling

gluten attaxia

My Garden picture .. Suffolk, England

Support for my lovely Mum

Sudden Muscle Weakness and falling.

Due to see my neurologist but don’t know if they’re doing clinical appointments & unsure wether to ring them or not.

Roy

Hyperextended Knee?

took me by surprise

Search posts

Latest poll

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

Topics

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