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
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
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
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
Gone - exercise is the best remedy - its good you are seeing someone now because so much has changed - good luck
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.
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.
I don’t know if of interest, but my mum had ataxia not otherwise specified ( no cause / type found despite usual genetic tests undertaken - exome sequencing). Late last year she received funding to undergo full genome sequencing under the rare conditon eligibility criteria - which lead to a diagnosis of SCA type 48. It’s relatively new (I think only be known roughly since 2018ish and there is not much literature on it). Might be worth a consideration ?