vestibular dysfunction

[mimosaholland]

Hello, I was diagnosed 7 years ago with SCA unknown cause, following blood tests.

Does anyone else suffer with vestibular dysfunction? I’m seeing a vestibular physio this week.

Thank you

[Sea_]

yes I do and am seeing someone about it when I go across to London in June

A gene similar to sca 45 came up in October 23 in an ataxia panel so hopefully get whole genome sequence done as part of London appointment and get a definite cause I’ll let you know

Good luck in the meantime

[Amynah in reply to Sea_]

Good luck to you as well

[mimosaholland in reply to Sea_]

Good luck and thank you

[Amynah]

Hi I had vestibular problems ages ago and saw a physio at UCL and she gave me a lot of eye exercises to do - for 6 months I did them religiously - now they are gon

[mimosaholland in reply to Amynah]

Thank you for the information, take care

[Amynah]

Gone - exercise is the best remedy - its good you are seeing someone now because so much has changed - good luck

[mimosaholland in reply to Amynah]

Thank you

[wobblybee]

I have a history of Vestibular issues linked to my diagnosis of Idiopathic Cerebellar Ataxia.

So far genetic testing has failed to find a link….including being negative for CANVAS.

CANVAS is a type of late-onset cerebellar ataxia. CANVAS stands for Cerebellar Ataxia, Neuropathy and Vestibular Areflexia Syndrome. This means that it involves a combination of cerebellar (relating to the part of the brain that regulates movement), proprioceptive (relating to the position and movement of the body) and vestibular impairment (relating to the parts of the brain that control balance and eye movements).

A common genetic cause of CANVAS has recently been identified. The identification of this genetic mutat

I live in Newcastle, but have also been seen at Queen Square in London..and referred to UCHL Throat,Nose and Ear Hospital in London.

Currently…I’m hoping for results from Whole Genome Sequencing.

[mimosaholland in reply to wobblybee]

Thank you so much for the information. Wishing you many thanks

[pipsie]

Yes I was diagnosed with cerebellar ataxia and had every test under the sun and they couldn't find the cause. I am slowly getting weaker and weaker and I know I must keep moving and exercise but it is hard and people do not really understand.