Experiences with

Ataxic gait

I’ve picked up a lot of tips and advice from you lovely people in this community and am hoping for some on this subject. My husband was initially diagnosed ( as many others have been) with MS. Twenty years on an MRI proved it not to be the case and he was referred to Queens and diagnosed with Idiopathic

I have been diagnosed with Idiopathic Cerebellum Ataxia for 6 years . My consultant recently arranged for a TG6 test at Sheffield hospital . The result came back as mildly positive ( 4.2 with 4.0 as normal ) As I understand it , a strict gluten free diet should remove antibodies from the body preventing

I was diagnosed with Idiopathic Cerebellar Ataxia in 2018 and had all the usual tests which proved negative . My neurologist in Aberdeen recently managed to arrange a TG6 blood test in Sheffield . The result was 4.2 U/ML , and a result >4 is positive.I have none of the usual symptoms of celiac disease

Hi all. I urge anyone who has not yet been diagnosed with a particular type of ataxia , so idiopathic of unknown cause, which means they do not know what is causing it. To contact Sheffield and see if you can participate in a new study into gluten ataxia. Although a gluten free diet will not cure ataxia

🙂People in the UK Improving diagnosis and management of Gluten ataxia Ataxia UK, Coeliac UK, and the Sheffield Hospitals Charity have awarded funding to Professor Marios Hadjivassiliou and colleagues at the Sheffield Ataxia Centre, for a research project to help improve the diagnosis and management

I have a COMPEX SP8.0 (it is not cheap, and it is the best EMS on the market) and it can be adjusted based on its measurement of the muscles. I am not taking any half measures when dealing with my SCA3. I do not go to maximum EMS levels as this can cause later discomfort. However, with regular use I

Researchers from King’s College London, software developers, and a group of people living with long-term conditions have co-designed a new intervention to help individuals manage low mood and depressive symptoms. KCL are recruiting adults living with any long-term physical health condition(s), including

I am very confused - what kind of care package do people with ataxia have - I need everyone help - I tell care manager that I have a mobility disability and they can't seem to understand - they are so used to dealing with dementia and ms and have no idea what ataxia is - it doesn't matter how many times

Once I had my MRI I was diagnosed with a Meningioma Brain Tumour which was causing my Ataxic Gait. I was going to leave this group as it felt wrong as that is not what I have. Some really kind people asked me to stay and keep in touch on here. I had my surgery 3 Feb 2022.

If you or someone you know has a genetically confirmed diagnosis of Autosomal Recessive Spinocerebellar Ataxia Type-17 (SCAR17), you could take part in a new survey about starting a family. The charity Genetic Alliance UK, of which Ataxia UK is a member, are currently sharing a consultation survey

HU can be so informative providing desperate people with hope that is not provided by doctors, neurologists and the medical professionals, so I mean the NHS!!!!I know this is controversial with many but unfortunately those of us who are under the London or Sheffield clinic have taken so long to get there

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 shrinking or atrophy of cerebellum, but my gait has all ataxic symptoms as I am very wobbly and my gait became even swaying.

Just want to make it clear that having gluten ataxia and then going gluten free is not a cure. For many there is still no medication and only if you don't respond to a gluten free diet are you offered anything.A gluten free diet and a healthy eating approach along with regular exercise helps. I also

Hi all Hope you are all well. How disabled do we get with Ataxia I know it has a lot of dependencies but just wondering if Ataxia suffers need help with showers and baths etc. I’m coming to a point where I have to make some big decisions so just after any help to make the decisions a bit easier to

I had an mri in January which identified significant cerebellum atrophy and diagnosed with progressive cerebellar ataxia. I am going through testing to try and identify the cause but all negative so far. I would like to try to get a holiday , am using Nordic poles and have a four wheeler. I’m wondering

gait became normal, and/or vibratory sensation that was completely absent at least in the ankles prior to therapy became easily detectable within 6 months of treatment."

After nearly 3 years of gluten free and dairy free diet, I would like to hear from others. Their personal stories and any support groups. There is so much information and knowledge to share with each other. Thank you.

Bill Moore & his daughter Jessica Oberlin, two members of NAF, recently shared their stories of living with SCA3 as part of a feature for the Critical Path to Therapeutics for the Ataxias (CPTA). The CPTA aims to optimize clinical trials for inherited Ataxias. Impact stories like theirs can help researchers

Hi all, is there anyone with gluten ataxia?Please can you say if you are seeing Professor Hadjivassiliou at Sheffield. And receiving treatment and medication for autoimmunity. I am interested to know just how many receive treatment other than going "gluten free". I have already seen the Professor who

Friends, I want to ask you a question. After consulting your previous replies and information, I saw trehalose. I tried to take trehalose orally for nearly a week and found that I did have gastrointestinal discomfort, always farting and diarrhea. I want to know if there is any solution to this