Experiences with

Ataxia

of gluten ataxia.

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.

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 .

Twenty years on an MRI proved it not to be the case and he was referred to Queens and diagnosed with Idiopathic Cerebellar Ataxia, that was back in 2010. He has been under local Neurology since the beginning with little support.

I have been diagnosed with Idiopathic Cerebellum Ataxia for 6 years . My consultant recently arranged for a TG6 test at Sheffield hospital .

#SCAR17 #AtaxiaResearch #AtaxiaSurvey #GeneticAllianceUK #ataxia #AtaxiaUK

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

* Friedreich's ataxia is an inherited, rare cause of ataxia. People with ataxia have trouble coordinating their movements. Ataxia occurs in a variety of conditions and diseases.

Hi all I am having ataxia symptom since around age of 21, was only get it diagnose around age 26, this year i am 32 by the way. My doctor could not diagnose what kind of ataxia i have, hence she just say this is idiopathic ataxia. For me, the ataxia have been progress slowly but steadily worse.

Hi Can someone tell me if a person has been tested for ataxia and it’s positive , can it totally miss a generation without affecting anyone in that generation or would it mean someone was just a carrier of ataxia xx

Ataxia suviver

Im stressed having illness.

You can take part in this study if you have a confirmed diagnosis of one of the following conditions in addition to a speech disorder: -Cerebellar Ataxia, Neuropathy and Vestibular Areflexia Syndrome (CANVAS) -Spastic Paraplegia Type 7 (SPG-7) -Gluten Ataxia -Paraneoplastic Ataxia To take part

Does anyone here have Opsoclonus Myoclonus Ataxia ( OMA)? Diagnosed with this apparently rare (in Adults & in UK). After a near fatal Viral Meningitis in Oct’23 was discharged with cerebellum Ataxia. No further help was available & my GP admitted very little is known about Ataxia.

I was recently chatting with my elder Brother about Ataxia….. he told me that I was born with body tremors, but as far as I know, it was never investigated.

My partner was diagnosed with cerebella ataxia about 4 years ago. He has the usual symptoms of balance loss, problems walking, etc. What I don't read much about on here or any other site, is the constant pain that ataxia is causing.

do other people with ataxia get yearly appointments

Carolyn Yrigollen will teach us what gene therapy is, the different types of gene therapy, and how gene therapy could be used to treat Ataxia in the future. We will also discuss the limitations of gene therapy technology, as well as what research is being done right now on gene therapy for Ataxia.

I wondered if I should push for referral to Sheffield Ataxia centre as my understanding was they could do a multi disciplinary assessment that would better help me plan for her future.

But my ataxia is getting the better of me.