CANVAS

[tedjohnson]

I would be interested to hear from anyone who has been diagnosed with CANVAS which is a complication of Ataxia

If you Google canvas you can read all about it but because I have 'got it' I would be interested in other members experience

Good luck to everyone . Ted

[3chickens]

I was diagnosed with CANVAS in 2014. Didn't know it was a complication of Ataxia thought, I just thought Ataxia was one of the conditions.

[tedjohnson in reply to 3chickens]

I was asking how. It infected you as I gather that canvas has different symptoms than just Ataxia perhaps I was wrong in using the word 'complication'

Good luck. Ted

[3chickens in reply to tedjohnson]

My main symptoms are general fatigue, double vision and nystagmus, balance problems, tremors,nerve pain in my legs and a lot of anxiety. I was diagnosed with bilateral vestibular failure in 2008 which was my first condition. Then in 2012 I saw a neurologist who did a load of tests and diagnosed peripheral neuropathy. A referral to another neurologist resulted in a diagnosis of Ataxia. I was referred to Prof Bronstein at Imperial College London in 2013 and he said I had CANVAS and there was no treatment. I haven't seen anyone since, just steadily getting worse. I am 53 and also going through the menopause which I think is making my symptoms worse - not something you need to worry about!

[PattiTilden in reply to 3chickens]

I realized on my own that I have canvas as well. It is progressing rapidly. How about you? Please email me at [e-mail]. Thanks, Patti

[tedjohnson]

Dear 3chickens

You have described virtually all the symptoms that I have------lovely isn't it😂😂😂. Like you say I haven't got the'female' problems though!!

Although we are told there is no cure, it helps to know how other people are feeling I tried doing some exercises for a few days and guess what, l can hardly walk today---- ha. ha such is life

Take care and look after yourself. Ted