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Ataxic gait
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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 interesting information. SLS-005 contains the active ingredient trehalose, a low molecular weight disaccharide (0.342 kDa) that has been shown to
🙂 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 interesting information. SLS-005 contains the active ingredient trehalose, a low molecular weight disaccharide (0.342 kDa) that has been shown to
wobblybee
in
Ataxia UK
2 years ago
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 patients with spinocerebellar ataxia. Following the demonstration of troriluzole’s ability to attenuate disease progression in a 48-week open-label
Melissa Beiner, MD, Biohaven Pharmaceuticals, Inc., New Haven, CT, discusses the findings of a Phase II/III clinical trial (NCT02960893) of troriluzole in patients with spinocerebellar ataxia. Following the demonstration of troriluzole’s ability to attenuate disease progression in a 48-week open-label
skyasll
in
Ataxia UK
2 years ago
Appalling Outpatients Appointment
I want to share the awful treatment I had at my appointment with the Neurology consultant at my local hospital last week. At little background to it - I had not had a face-to-face consultation since April 2019, no appointment in 2020 and a telephone appointment in April 2021 by the consultant I've seen
I want to share the awful treatment I had at my appointment with the Neurology consultant at my local hospital last week. At little background to it - I had not had a face-to-face consultation since April 2019, no appointment in 2020 and a telephone appointment in April 2021 by the consultant I've seen
Tiggywinkles
in
Ataxia UK
2 years ago
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Friedreich's Ataxia Diagnosis - questions to ask the neurologist?
I have had an
ataxic
gait
and balance issues since the age of 25 (I am 30 now) and first saw a neurologist in 2016 for these issues. I do not have a noticeable slurring of speech or any swallowing difficulties but I do have sensory neuropathy.
I have had an
ataxic
gait
and balance issues since the age of 25 (I am 30 now) and first saw a neurologist in 2016 for these issues. I do not have a noticeable slurring of speech or any swallowing difficulties but I do have sensory neuropathy.
MSW_91
in
Ataxia UK
3 years ago
Disclosing a disability in job applications
Hi everyone I am currently applying for new jobs and as part of the application process there is a section asking if 'you consider yourself to have a disability'. I know that Ataxia is a disability, but can anyone advise what the implications are for ticking this box? I was diagnosed with Friedreich's
Hi everyone I am currently applying for new jobs and as part of the application process there is a section asking if 'you consider yourself to have a disability'. I know that Ataxia is a disability, but can anyone advise what the implications are for ticking this box? I was diagnosed with Friedreich's
MSW_91
in
Ataxia UK
3 years ago
Human study of Nicotinamide Riboside for Ataxia Telang.
The study was open label and only included 24 people, but the results were quite impressive. Let's hope further studies help confirm the results and show this was not just a placebo effect: https://pubmed.ncbi.nlm.nih.gov/34515380/ For those who do not recognize the name Nicotinamide Riboside is the
The study was open label and only included 24 people, but the results were quite impressive. Let's hope further studies help confirm the results and show this was not just a placebo effect: https://pubmed.ncbi.nlm.nih.gov/34515380/ For those who do not recognize the name Nicotinamide Riboside is the
CardiCorgi
in
Ataxia UK
3 years ago
Did anyone's symptoms return after going gluten free?
Hi everyone, I was diagnosed with coeliac disease in December 2019 and have been on a gluten free diet ever since. I originally went to the Dr as I was having real problems with dropping things, balance, brain fog, tiredness and memory as well as having trouble explaining things and finding the correct
Hi everyone, I was diagnosed with coeliac disease in December 2019 and have been on a gluten free diet ever since. I originally went to the Dr as I was having real problems with dropping things, balance, brain fog, tiredness and memory as well as having trouble explaining things and finding the correct
Sparkstar2
in
Ataxia UK
3 years ago
Long term side effects after AstraZeneca vaccine
Approx 3 months after l had the first dose of AstraZeneca vaccine l had pain in my knees running down my shins and into my ankles, l am in constant pain when l walk, l wake up with the pain in the night when l try to change position in bed, l have had to buy a frame for my toilet as l am unable to sit
Approx 3 months after l had the first dose of AstraZeneca vaccine l had pain in my knees running down my shins and into my ankles, l am in constant pain when l walk, l wake up with the pain in the night when l try to change position in bed, l have had to buy a frame for my toilet as l am unable to sit
ScubaJax
in
Ataxia UK
3 years ago
Tips for coping with Gluten Ataxia
Ataxia UK Annual Conference: Gluten-free diet tips for gluten ataxia patients At the 2021 Ataxia UK Annual Conference, there was an interesting session from Professor Marios Hadjivassiliou and Emma Foster on immune and gluten ataxias. During the Q and A session, Emma Foster, who is a Senior Ataxia Nurse
Ataxia UK Annual Conference: Gluten-free diet tips for gluten ataxia patients At the 2021 Ataxia UK Annual Conference, there was an interesting session from Professor Marios Hadjivassiliou and Emma Foster on immune and gluten ataxias. During the Q and A session, Emma Foster, who is a Senior Ataxia Nurse
wobblybee
in
Ataxia UK
3 years ago
Overview of the Ataxias
🙂 This is lengthy, but it does have useful, interesting information. Overview of Adult Onset Cerebellar Ataxia Pravin Khemani, MD The ataxias are clinically heterogenous disorders caused by pathological processes affecting the cerebellum and cerebellar pathways resulting in impaired coordination. The
🙂 This is lengthy, but it does have useful, interesting information. Overview of Adult Onset Cerebellar Ataxia Pravin Khemani, MD The ataxias are clinically heterogenous disorders caused by pathological processes affecting the cerebellum and cerebellar pathways resulting in impaired coordination. The
wobblybee
in
Ataxia UK
3 years ago
5 Week after AstraZeneca vaccine and still feeling unwell.
I am a 50 year old woman with no known health issues. I take no medications and I exercise regularly. Since taking the vaccine I suffer from headaches daily, I wake with one every day. I have an annoying cough and I feel dizzy and confused all the time. I am 24/7 fatigued!! I never usually even get the
I am a 50 year old woman with no known health issues. I take no medications and I exercise regularly. Since taking the vaccine I suffer from headaches daily, I wake with one every day. I have an annoying cough and I feel dizzy and confused all the time. I am 24/7 fatigued!! I never usually even get the
DChad
in
Ataxia UK
3 years ago
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 gluten but ruled out celiac disease. I’ve been told to start a gluten free diet.I would like to hear from others please in Huddersfield/west
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 gluten but ruled out celiac disease. I’ve been told to start a gluten free diet.I would like to hear from others please in Huddersfield/west
Guyb
in
Ataxia UK
3 years ago
Proprioception under investigation.
My wobbliness when walking is getting worse, as my cerebellum dies off. As it sits across the communication channel from my brain to my body so it is interfering with instructions to move. I have recently started seeing an acupuncturist and we are exploring increasing my proprioception. (How my body
My wobbliness when walking is getting worse, as my cerebellum dies off. As it sits across the communication channel from my brain to my body so it is interfering with instructions to move. I have recently started seeing an acupuncturist and we are exploring increasing my proprioception. (How my body
nigelrheath
in
Ataxia UK
3 years ago
Do any of you have intermittent ataxia episodes that come on only after eating a meal?
I believe I have gluten-sensitivity ataxia, but none of my three doctors (naturopath, general practitioner, kidney specialist) have heard of it, so am continuing a gluten-free diet. I had a test for gluten sensitivity a few years ago, which was negative; my naturopath told me the test showed I didn't
I believe I have gluten-sensitivity ataxia, but none of my three doctors (naturopath, general practitioner, kidney specialist) have heard of it, so am continuing a gluten-free diet. I had a test for gluten sensitivity a few years ago, which was negative; my naturopath told me the test showed I didn't
Hidden
in
Ataxia UK
3 years ago
New way to walk
I can't remember if I've already posted this information or not!!! Hahaha memory is definitely not what it used to be. Anyway some time ago I posted about using two sticks to walk with. But a few months ago a replacement physiotherapist gave me some excellent help. Firstly let me explain what was happening
I can't remember if I've already posted this information or not!!! Hahaha memory is definitely not what it used to be. Anyway some time ago I posted about using two sticks to walk with. But a few months ago a replacement physiotherapist gave me some excellent help. Firstly let me explain what was happening
ww-wibblywobbly
in
Ataxia UK
3 years ago
What’s your experience with painful knees?
I have ataxia (sca 6), Sjogrens, osteoporosis, and osteoarthritis. Wasn’t sure where to post this question but decided to post under Ataxia. I had a total knee replacement two and a half years ago. It is still painful to walk ( painful in a different way...very tight and always feels swollen). I have
I have ataxia (sca 6), Sjogrens, osteoporosis, and osteoarthritis. Wasn’t sure where to post this question but decided to post under Ataxia. I had a total knee replacement two and a half years ago. It is still painful to walk ( painful in a different way...very tight and always feels swollen). I have
Mollymeer
in
Ataxia UK
3 years ago
The key to future treatment for incurable ataxia.
Researchers unlock the key to future treatment for incurable ataxia Tuesday, November 17, 2020 A simple new blood test that could speed up drug discovery for the treatment of a type of inherited ataxia has been developed by researchers from the Ataxia Centre at UCL Queen Square Institute of Neurology
Researchers unlock the key to future treatment for incurable ataxia Tuesday, November 17, 2020 A simple new blood test that could speed up drug discovery for the treatment of a type of inherited ataxia has been developed by researchers from the Ataxia Centre at UCL Queen Square Institute of Neurology
wobblybee
in
Ataxia UK
3 years ago
virtual reality
There is some evidence that training with immersive virtual reality and physiotherapy is a promising approach for
ataxic
gait
and balance etc. Just to let you all know that because i m as thick as a brick and have the same IQ as a dead fish I’ve made some changes to my life.
There is some evidence that training with immersive virtual reality and physiotherapy is a promising approach for
ataxic
gait
and balance etc. Just to let you all know that because i m as thick as a brick and have the same IQ as a dead fish I’ve made some changes to my life.
Hidden
in
Ataxia UK
4 years ago
Newly diagnosed
Hello Everyone I have just been diagnosed with cerebral ataxia, no specific one just yet as still waiting for results of some genetic testing and been told may not get an answer. I have roughly started with symptoms30yr ago, very subtle and was wondering what early symptoms others had and with hindsight
Hello Everyone I have just been diagnosed with cerebral ataxia, no specific one just yet as still waiting for results of some genetic testing and been told may not get an answer. I have roughly started with symptoms30yr ago, very subtle and was wondering what early symptoms others had and with hindsight
Timotae
in
Ataxia UK
4 years ago
sca3 patient being treated as MSA
A doctor recomanned me to be administered in hospital to cure my disease for 10 days. What worries me is that he kept talking about mutiple system atrophy (MSA) and I have been diagnosed to be sca3 in genetic test 4 years ago. Has anyone of you had the same experience? l am worried that once I have
A doctor recomanned me to be administered in hospital to cure my disease for 10 days. What worries me is that he kept talking about mutiple system atrophy (MSA) and I have been diagnosed to be sca3 in genetic test 4 years ago. Has anyone of you had the same experience? l am worried that once I have
Collinhucn
in
Ataxia UK
4 years ago
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