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Multiple System Atrophy
Hi. My mum was diagnosed with a less common form of ataxia about 5 years ago. She’s degenerated very quickly and a new consultant is suggesting a diagnosis of multiple system atrophy now. Does anyone have any experience with this? Thank you.
Hi. My mum was diagnosed with a less common form of ataxia about 5 years ago. She’s degenerated very quickly and a new consultant is suggesting a diagnosis of multiple system atrophy now. Does anyone have any experience with this? Thank you.
monsterbadger
in
Ataxia UK
5 years ago
Do Compression Socks Work?
Hi -- Has anyone tried compression socks of any height and compression? I was wondering if they help with neuropathy or circulation or muscle/tendon fatigue. I notice there are two different choices: of compression either 20-30 or 15-20. Also some actually have cotton in their thread blend. Some
Hi -- Has anyone tried compression socks of any height and compression? I was wondering if they help with neuropathy or circulation or muscle/tendon fatigue. I notice there are two different choices: of compression either 20-30 or 15-20. Also some actually have cotton in their thread blend. Some
ninotchka
in
Ataxia UK
5 years ago
Appetite
Has anyone found that they have lost their appetite, and lost weight, after an Ataxia diagnosis? Has anyone tried a gluten free diet? I live in North London/Enfield, am 70, and wonder if their is anyone locally who has been diagnosed with Ataxia? My diagnosis, some 2 years ago, is idiopathic late onset
Has anyone found that they have lost their appetite, and lost weight, after an Ataxia diagnosis? Has anyone tried a gluten free diet? I live in North London/Enfield, am 70, and wonder if their is anyone locally who has been diagnosed with Ataxia? My diagnosis, some 2 years ago, is idiopathic late onset
peakerhome
in
Ataxia UK
5 years ago
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Students
Hi all, I have been asked if I would attend a Medical School based in the hospital I attend if it helps the future generation why not. I was put forward for IVIg treatment in January and I’m still waiting has anyone else had this treatment and if so did it help? I have Cerebella Atrophy only diagnosed
Hi all, I have been asked if I would attend a Medical School based in the hospital I attend if it helps the future generation why not. I was put forward for IVIg treatment in January and I’m still waiting has anyone else had this treatment and if so did it help? I have Cerebella Atrophy only diagnosed
Jacqui-A
in
Ataxia UK
5 years ago
How did I miss this?? A real CURE for some genetic SCAs may be close!!!
By close I mean within a decade. Especially if you have SCA3 which is already in the pipeline for treatment. First the cliff notes version: A company in the Netherlands is moving towards a human clinical trial of a technology that could actually CURE many genetic SCAs with a one time injection into
By close I mean within a decade. Especially if you have SCA3 which is already in the pipeline for treatment. First the cliff notes version: A company in the Netherlands is moving towards a human clinical trial of a technology that could actually CURE many genetic SCAs with a one time injection into
sunvox
in
Ataxia UK
5 years ago
Hello to hope. Thank you for this forum
This forum kept we awake way past a reasonable bedtime as I could not stop reading all the posts and replies. As a new member and newly diagnosed ataxia statistic, I guess I’m not alone. I must be getting out of the angry frustrated stage and moving on to the “do something about it” stage. Anyway, my
This forum kept we awake way past a reasonable bedtime as I could not stop reading all the posts and replies. As a new member and newly diagnosed ataxia statistic, I guess I’m not alone. I must be getting out of the angry frustrated stage and moving on to the “do something about it” stage. Anyway, my
Rezzy3
in
Ataxia UK
5 years ago
A great day for Ataxia and other disorders.
I have long lamented the fact that little research was likely to happen if there was no money to be made. Well, today I have been proven wrong. A university in the Netherlands is planning a double blind placebo controlled clinical trial of Niagen. The study is in patients with Parkinson's but really
I have long lamented the fact that little research was likely to happen if there was no money to be made. Well, today I have been proven wrong. A university in the Netherlands is planning a double blind placebo controlled clinical trial of Niagen. The study is in patients with Parkinson's but really
sunvox
in
Ataxia UK
5 years ago
Can ataxia improve to hardly any symptoms?
Last year I had slurred speech and an “ataxia gait” after a couple of months these symptoms vanished completely, I had an mri twice and there was no abnormal problems I also had a lumber puncher and that was clear so was my blood tests. I do have coeliac disease and I didn’t follow my gluten free diet
Last year I had slurred speech and an “ataxia gait” after a couple of months these symptoms vanished completely, I had an mri twice and there was no abnormal problems I also had a lumber puncher and that was clear so was my blood tests. I do have coeliac disease and I didn’t follow my gluten free diet
GlutenLadYorkshire
in
Ataxia UK
5 years ago
Gluten ataxia
Hi all I’m just wondering how you are diagnosed as having gluten ataxia, I currently have coeliac disease which was diagnosed about 5 Years ago, I didn’t follow a gluten free diet and about last I fell ill with balance issues slurred speech and an ear infection which improved in hospital and a couple
Hi all I’m just wondering how you are diagnosed as having gluten ataxia, I currently have coeliac disease which was diagnosed about 5 Years ago, I didn’t follow a gluten free diet and about last I fell ill with balance issues slurred speech and an ear infection which improved in hospital and a couple
GlutenLadYorkshire
in
Ataxia UK
5 years ago
Cognitive impairment
My husband has had c a for 13 years. At first it was progressing very slowly but recently his walking and balance have got quite bad. He also has problems with hallucinations and with working out who I am. He cannot retain any sort of timetable and worries about what will happen. Does anyone know if
My husband has had c a for 13 years. At first it was progressing very slowly but recently his walking and balance have got quite bad. He also has problems with hallucinations and with working out who I am. He cannot retain any sort of timetable and worries about what will happen. Does anyone know if
Dority
in
Ataxia UK
5 years ago
UC50 assessment Tribunal
well today is the day, after having my assessment in April last year (2018), and had the mandatory appeal, with the same result zero points, and was slightly annoyed, to say the least, at the way I was treated by the so called health pro (her head was continually face down at her PC). I am taking things
well today is the day, after having my assessment in April last year (2018), and had the mandatory appeal, with the same result zero points, and was slightly annoyed, to say the least, at the way I was treated by the so called health pro (her head was continually face down at her PC). I am taking things
peterallison
in
Ataxia UK
5 years ago
Researchers looking closer at protein clearance as the best way to treat SCA now.
This post is technical in nature so I hope the non-technical folk will forgive me. If you are new to this site or to my posts, let me start by saying that I have SCA1 but have managed to keep my symptoms at bay. I believe I am doing so with a simple combination of diet, exercise, and carefully chosen
This post is technical in nature so I hope the non-technical folk will forgive me. If you are new to this site or to my posts, let me start by saying that I have SCA1 but have managed to keep my symptoms at bay. I believe I am doing so with a simple combination of diet, exercise, and carefully chosen
sunvox
in
Ataxia UK
6 years ago
Looking for support / advise
My husband, 63, was diagnosed 3 months ago with Gait ataxia due to "moderate carabellar atrophy". He also has sensory loss in his right arm and leg. He used to be a heavy drinker about 30 years ago but reduced this, over the last 5 years or so he was drinking 1 night a week on average. His neurologist
My husband, 63, was diagnosed 3 months ago with Gait ataxia due to "moderate carabellar atrophy". He also has sensory loss in his right arm and leg. He used to be a heavy drinker about 30 years ago but reduced this, over the last 5 years or so he was drinking 1 night a week on average. His neurologist
Stumps55
in
Ataxia UK
6 years ago
Back keeps giving way
Hi all, My ankles, knees and hips have been giving way for many years. Even before I knew that I had Ataxia. When they give way, I now grab something to hold onto to stop from falling, otherwise I'm on the floor. I then use my stick indoors, which I usually try not to use indoors, for my security.
Hi all, My ankles, knees and hips have been giving way for many years. Even before I knew that I had Ataxia. When they give way, I now grab something to hold onto to stop from falling, otherwise I'm on the floor. I then use my stick indoors, which I usually try not to use indoors, for my security.
ww-wibblywobbly
in
Ataxia UK
6 years ago
The China Study
Hi All, I have recently bought the above book and it seems that dairy products are bad for us along with animal food products, the book suggests we eat plant foods. Although ataxia isn't mentioned MS & Parkinsons is. Along with Cerebella Atrophy I have been diagnosed with anti-Purkinge antibodies does
Hi All, I have recently bought the above book and it seems that dairy products are bad for us along with animal food products, the book suggests we eat plant foods. Although ataxia isn't mentioned MS & Parkinsons is. Along with Cerebella Atrophy I have been diagnosed with anti-Purkinge antibodies does
Jacqui-A
in
Ataxia UK
6 years ago
Dysphagia
Swallowing difficulties are common with ataxia people. First appears to be coming from lungs, asthma, chest infection etc. Ivan recently had a fluoroscopic swallow, at X-Ray dept. Resulting now in soft food only and thickened fluids. He coughed continually as his throat tried to get rid of bits of
Swallowing difficulties are common with ataxia people. First appears to be coming from lungs, asthma, chest infection etc. Ivan recently had a fluoroscopic swallow, at X-Ray dept. Resulting now in soft food only and thickened fluids. He coughed continually as his throat tried to get rid of bits of
icdowsettNZ
in
Ataxia UK
6 years ago
Today's herbal supplement of interest: Skullcap.
A while back I was arguing with someone about which herbal flavonoid was best for helping clear toxic proteins from the brain. At the time my research pointed to EGCG (Green Tea extract) as my herb of choice. Since that argument a study came out showing that high levels of EGCG were potentially harmful
A while back I was arguing with someone about which herbal flavonoid was best for helping clear toxic proteins from the brain. At the time my research pointed to EGCG (Green Tea extract) as my herb of choice. Since that argument a study came out showing that high levels of EGCG were potentially harmful
sunvox
in
Ataxia UK
6 years ago
Problems with sleeping comfortably
This post is aimed at anyone with more advanced ataxia. After 21 years of Friedrich's Ataxia I am now so stiff lying in bed that I find it hard to get comfortable. I always used to sleep on my side but find this so uncomfortable now that I am trying to sleep on my back. At the moment this doesn't work
This post is aimed at anyone with more advanced ataxia. After 21 years of Friedrich's Ataxia I am now so stiff lying in bed that I find it hard to get comfortable. I always used to sleep on my side but find this so uncomfortable now that I am trying to sleep on my back. At the moment this doesn't work
ConantheLibrarian
in
Ataxia UK
6 years ago
Multiple Systom Atrophy
Having had time to digest things and do some research , I have looked at Parkinson’s Plus Syndrome and I understand there are three possible illnesses that come under the title . Reading them in detail and thinking about my husbands symptoms , I am almost sure he has Muliple Systom Atrophy . I believe
Having had time to digest things and do some research , I have looked at Parkinson’s Plus Syndrome and I understand there are three possible illnesses that come under the title . Reading them in detail and thinking about my husbands symptoms , I am almost sure he has Muliple Systom Atrophy . I believe
Nichod100
in
Ataxia UK
6 years ago
Clinical trial of Niagen for treatment of a neurological disorder.
So yesterday while just doing a general search I came across an old bit of news and a new clinical trial that I was surprised I had not previously uncovered. First the study: - Effective treatment of mitochondrial myopathy by nicotinamide riboside, a vitamin B3 https://www.ncbi.nlm.nih.gov/pmc/articles
So yesterday while just doing a general search I came across an old bit of news and a new clinical trial that I was surprised I had not previously uncovered. First the study: - Effective treatment of mitochondrial myopathy by nicotinamide riboside, a vitamin B3 https://www.ncbi.nlm.nih.gov/pmc/articles
sunvox
in
Ataxia UK
6 years ago
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