Posts - Ataxia UK | HealthUnlocked

Ataxia UK

4,084 members•4,658 posts

All posts for August 2022

Finny feeling

Hi there,has anyone experienced this, I have had it a few years but got worse lately... when I am lying in bed maybe for an hour or so I get a sore pain in...

Hi there,has anyone experienced this, I have had it a few years but got worse ...

Tazmurray

•2 years ago

5 Replies

Troriluzole - Biohaven trial

Dear all, does anyone know more about this?...

kid97

•2 years ago

1 Reply

A update

An update, as not posted for a while. My Cerebellar Ataxia (sca6) has progressed now to the stage where I have trouble walking (used a stick when outside for 4...

An update, as not posted for a while. My Cerebellar Ataxia (sca6) has progressed...

Butcherpete

•2 years ago

2 Replies

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Troriluzole

Hi,has anyone heard any news on Troriluzole for SCA treatment, I heard there was A trial but not heard of outcome????

Hi,has anyone heard any news on Troriluzole for SCA treatment, I heard there was...

Tazmurray

•2 years ago

11 Replies

LOCA or MSA

Maybe my Late Onset Cerebellar Ataxia is MSA? I don’t have the low blood-pressure problem and after 17 years am still alive but all other symptoms fit. In the...

Maybe my Late Onset Cerebellar Ataxia is MSA? I don’t have the low blood-pressu...

klazien

•2 years ago

24 Replies

Study relating to Intravenous Infusion of Trehalose

🙂 There has been previous mentions of Trehalose..so it’s interesting to know this study is being done ..re people diagnosed with SCA3 This is copied from an...

🙂 There has been previous mentions of Trehalose..so it’s interesting to know th...

wobblybee

•2 years ago

1 Reply

Wilson’s Disease

Has anyone had their Cerebellar Ataxia re diagnosed as Wilson’s Disease? It’s apparently difficult to diagnose, but the neurological symptoms are similar.

Has anyone had their Cerebellar Ataxia re diagnosed as Wilson’s Disease? It’s a...

Ostap

•2 years ago

3 Replies

When on earth will traluzole be available

I don't know why people seldom discuss troriluzole. It has strong evidence on SCA3 to prove that it has significant therapeutic effect. I really look forward...

I don't know why people seldom discuss troriluzole. It has strong evidence on SC...

xiaoduoyu

•2 years ago

7 Replies

BPPV a form of vertigo

Had a couple of incidents of this, involving a sudden change of head position. Does anyone see a connection with cerebellar ataxia?

Had a couple of incidents of this, involving a sudden change of head position. ...

Telegraphist

•2 years ago

5 Replies

Talterelin TRH analogue

In Japan there is a medicine Talterelin TRH analogue available. My ex-neurologist fund that info. I read on the web that the medicine is developed to help...

In Japan there is a medicine Talterelin TRH analogue available. My ex-neurologi...

Tommi_

•2 years ago

3 Replies

unknown ataxia

I am unknown ataxia at the moment. It seems hard to be this. I do not really know how I can connect or link with people. I am my own set of symptoms and do not...

I am unknown ataxia at the moment. It seems hard to be this. I do not really kno...

Hidden

•2 years ago

17 Replies

quick question

Does anyone have or know someone who has ever used,or is using a Whill powered wheelchair? Or Trekinetic?

Does anyone have or know someone who has ever used,or is using a Whill powered...

Sherena

•2 years ago

6 Replies

New Diagnosis

Hi, I am newly diagnosed (since April) with Episodic Ataxia and had heard nothing about Ataxia until then. I have looked online and found out about the...

Hi, I am newly diagnosed (since April) with Episodic Ataxia and had heard nothin...

2hot

•2 years ago

4 Replies

Tru Niagen as a teament

I have SCA7, I'm a 33 year old female. My eyesight is pretty bad and my balance and co-ordination is ok but not great. I have been taing 900mg of Tru Nigen...

I have SCA7, I'm a 33 year old female. My eyesight is pretty bad and my balance ...

C2a2o2

•2 years ago

8 Replies

SLS 005 Trehalose ..potential treatment for ataxia

🙂 This will be at 7pm London time. NAF is www.ataxia.org..the National Ataxia Foundation Although recruitment is restricted to the US..this will give...

🙂 This will be at 7pm London time. NAF is www.ataxia.org..the National Ataxia...

wobblybee

•2 years ago

19 Replies

Flint Rehab

Is anyone familiar with Flint Rehab, and in particular their Fit Mi product?

Ostap

•2 years ago

1 Reply

Med Records

Does anyone know if our Ataxia Med Records are used for research? if not maybe they should be and if other countries agreed it would generate a huge amount of...

Does anyone know if our Ataxia Med Records are used for research? if not maybe ...

paul456

•2 years ago

6 Replies

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Posts - Ataxia UK | HealthUnlocked

Ataxia UK

All posts for August 2022

﻿Finny feeling

Troriluzole - Biohaven trial

A update

﻿Troriluzole

LOCA or MSA

Study relating to Intravenous Infusion of Trehalose

Wilson’s Disease

When on earth will traluzole be available

BPPV a form of vertigo

Talterelin TRH analogue

unknown ataxia

﻿quick question

New Diagnosis

Tru Niagen as a teament

SLS 005 Trehalose ..potential treatment for ataxia

Flint Rehab

Med Records

Search posts

Latest poll

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

Topics

Archive

Finny feeling

Troriluzole

quick question