Hello everyone. New. Has anyone here or their loved one been diagnosed with Canvas Syndrome? 49 and just diagnosed. Early onset

[Simms1]

canvas syndrome

Ataxia

balance, neuropathy, visual disturbance issues

[wobblybee]

Hi🙂I test negative for CANVAS even though my symptoms suggest it could be linked

There are at least 4 others here who test positive..

To see links to previous mentions..Type Canvas in the searchbox (top right)

🙂 You’ll have to scroll down the list that comes up...look for AtaxiaUK

I’ve seen other people who are positive..but on different support groups

[tedjohnson]

Hi😸 yes I have got canvas and as it is rare we are privileged?!! I can only tell you about my ‘life story’. I have had Ataxia for 13 years and I am in a wheelchair most of the time. Fortunately my speech is fairly good but I don’t talk too much to save it. I fall over sometimes due to balance problems and I can’t walk without help and crutches My hands cause me problems and won’t do what I want them to do. I make quite a lot of mistakes typing.There is no pain as such but I have problems with my sight and no longer drive. I have trouble turning my head left or right

Advise:- Keep cheerful, do as much as you can but don’t take dangerous risks

Best wishes. Ted

[1940girl in reply to tedjohnson]

Hi, Yes, I have canvas, symptoms started about 9yrs ago, was diagnosed about 3yrs ago, balance is not great, I have to use 2 sticks when outside and hold on to walls and furniture indoors, my hands don't always do what I want, I tend to drop stuff quite a lot, I try and stay positive, focusing on the things I can still do and not what I can't. as horrible as this is, it's always nice to have someone else to talk to about things.

[ww-wibblywobbly]

I've been tested in February for canvas. I shall know the results in October!

So maybe?

[viv112]

Hi, I did the genetic blood test in April 2021 and am still waiting for the result from the research team! My neurology consultant says I have all the symptoms and until now my neuropathy has been labelled idiopathic. My most recent diagnoses were polyneuronopathy and sensory ganglionopathy. I first started with numbness in my fingers 17 years ago and fortunately the progress of my condition was slow. But 7 years ago my balance started getting worse and I couldn’t walk in the dark. 5 years ago I started using a stick, and now I use 2 sticks or a 4 wheeled walker. The consultant has warned me I will eventually need a wheelchair. Another annoying symptom is a chronic cough which I’ve had for 20 years, which I believe is a symptom of Canvas. I am keen to be in touch with fellow sufferers. I go to a tai chi group for Parkinson’s sufferers and tai chi helps my movement and balance.