Experiences with

Ataxia

Does anyone else have this with Ataxia? Have a great day!

Every time after a fall or even a mild sickness, my Cerebellar Ataxia gets a bit worse but after the heart failure had half e year ago, my very frequent migraines stopped. No explanation for that.

But surely I can still be the arbiter of life with ataxia.[/i]

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.

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 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 .

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

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

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

Then join Managing Symptoms with Dr Michael Parkinson, a specialist neurologist from the London Ataxia Clinic, as he discusses how best to manage the different types of ataxia symptoms over time.

I have SCA 6 and nystagmus as one of my symptoms. I’m increasingly having difficulties with this when walking as it exacerbates the poor balance problem. I’m currently taking Gabapentin and have been doing so for a number of years. It’s been suggested by a healthcare professional that for the nystagmus

Spinocerebellar ataxia

I also have hereditary Ataxia SCA6.

My Ataxia symptoms (SPEECH, BALANCE, DIZZINES) get much worse when it rains. Does anyone else experience this?

Ataxia suviver

I can't find much about barefoot shoes and ataxia (or gait issues).

Hi, just wondered if anyone else is on a Paleo diet to try and reduce the ataxia symptoms?

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

Recently I came across a leaflet from Ataxia UK describing something called CANVAS (Cerebellar Ataxia, Neuropathy, and Vestibular Areflexia Syndrome). And most of the symptoms fit with mine.