Experiences with

Ataxia

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 Ataxia in October 2021 (aged 30) and currently work full time. I work in a desk-based role and do not require any adjustments to do my current job.

I currently work out regularly (cardio, weight training and swimming) as when ataxia was suspected by the neurologist I was advised to exercise as much as I can. P.S. I have registered with Ataxia UK and the FA patient registry :) Thank you in advance!

Progression over weeks to months is associated with paraneoplastic disorders; anti-glutamic acid decarboxylase (GAD)-antibody syndrome; steroidresponsive encephalopa thy and ataxia (SREAT or Hashimoto’s encephalopathy); gluten ataxia in Celiac disease (GA); vitamin deficiency states [e.g. ataxia with

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

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.

His knowledge of Friedreich's Ataxia was virtually non-existence - anyone could have found out more by 'Googling' it!

Is there any chance that menopause could efffect ataxia I'm going there the menopause but it seems like my ataxia symptoms have got worst my ataxia has been a slow progression but it seems different now hormones have affected me in all diffrent ways I was just wondering if it could affect ataxia symptoms

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.

Diagnosing and treating primary autoimmune cerebellar ataxia (PACA) Many people with ataxia are not given a specific diagnosis for the cause of their ataxia. This is known as idiopathic ataxia.

Does mobility or ataxia uk do travel insurance does anybody know please? 2. Does anyone have any other recommendations of travel insurance & prices if possible, that have ataxia & that you yourself have used in the past please? Many thanks Tracy-(ps I have idiopathic cerebellum ataxia)

Copied from www.ataxia.org Under 30 with Ataxia Support Group You must have Ataxia yourself and be ages 16-30 to join this group. Parents/Spouses/Friends of people with Ataxia are not permitted.

Not really getting a lot of info from Dr's just told I have ataxia Thanks Glenn

I have just been told I have ataxia so still having tests done but the incontinence nurse has put me on neditol tablets the nurse does not understand ataxia so don't know if the tablets are right for me so wondered if any body with ataxia takes them

Read more and register for this event here: https://www.ataxia.org.uk/ataxia-uk-events/all-about-ataxia/ What is All About ?

Is degeneration “normal” in ataxia even if the causes are not genetic? Any help or tips to manage his quality of life?

Does ataxia affect heart rate

I looked the symptoms up on google(disliked by the medical profession) but there nothing was for me since Ataxia was, as expected, not considered. I have a late onset cerebellum Ataxia and was diagnosed in 2005.

Trehalose Fast Tracked (by FDA) for Spinocerebellar Ataxia https://www.empr.com/home/news/drugs-in-the-pipeline/trehalose-fast-tracked-for-spinocerebellar-ataxia/ You can google SLS-005 and find a multitude of links.

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

Anyone else out there suffering from acquired ataxia? I am a member of the ataxia forum but it is move genetic type.