CANVAS.

[Artemisfowl]

Eight years ago I was diagnosed with Idiopathic Axonal Neuropathy. My consultant said that they didn’t know the cause, but he predicted how it would progress (a slow increase in the pain in my feet). And he was correct.

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.

in February I shall be seeing the neurologist who made the initial diagnosis to see if I do have CANVAS by a genetic test.

But I was wondering if anybody here has it?

[viv112]

Hi, I had the genetic blood test 4 years ago and I have CANVAS. It is a rare condition because both your parents must have had a recessive gene and then there is a 1 in 4 chance that you would inherit both recessive genes and develop CANVAS. My first typical symptom was a chronic cough which started in my 30s. Then 20 years later I started to get numbness in my fingers. nerve conduction tests showed up a peripheral axonal neuropathy in my arms and legs which affected my hands and feet. Another 10 years later I experienced sensory ataxia and couldn’t walk in the dark or on narrow paths. My diagnoses were polyneuronopathy and sensory ganglionopathy. In the last 2 year the Cerebella and Vestibular symptoms have become worse. My balance has deteriorated and I can only walk outside with a 4 wheeled Walker. My speech is becoming slurred and I am careful when I eat because of swallowing problems. Pain in my feet has never been a big problem for me. Hopefully your Neurologist will be able to advise you and if you do have other symptoms you may be offered the test. It took a long time before I received the result.

[Artemisfowl in reply to viv112]

Thanks. The absence of a persistent cough is the biggest thing pointing away from CANVAS. But, if I have it then both my younger brothers have a 25% chance of having it. So if I’m positive they can have an early warning.