CANVAS and Ataxia

[tedjohnson]

Hi everyone

Has anyone got or heard of CANVAS as this is something added to Ataxia. I am not quite sure what it is ----but I have got it!!

I have googled it but most of the information is very complicated I have got an appointment with the consultant but thought it might be interesting to hear the views of fellow 'canvassers' Best wishes. Ted

[Ziggurat]

Hi Ted,

I have CANVAS too. It is not actually added to Ataxia but more. It stands for Cerebellar Ataxia, Neuropathy (nerve damage), Vestibular Areflexia (paralysis of the inner ear.

It causes a good deal of pain in the limbs with the affected muscles, especially if you try to use the limbs (exercising, walking, or just sitting in a manner that is likely to put stress on the nerves.) I cannot walk steadily or without an aid for support and to get to the shops I use a mobility scooter. It also causes problems swallowing, you choke on every meal, to the point where you retch and feel nauseous.

Also there is a lot of fatigue, caused by doing quite normal things, like walking.You are in for a lot of fun, my Friend, but most of all, I am still learning about it and there is still a lot I have yet to understand.

[Mmenergy in reply to Ziggurat]

Hello, how long have you had canvas and help functioning?

I'm mobile now but don't know about future. That neuropathy is a killer. And my dry cough is annoying. The pass 3 years with this is life changing for sure.

Try to stay positive, and make plans. -mm

[wobblybee]

Hi 😊

patientslikeme.com have a forum. They list Cerebellar Ataxia, and also CANVAS.

😊xB

[Mmenergy]

Hello, I found out 2 months ago that my illness for the past 3 years is not RA but Canvas. How strange, but is reassuring to find like minded sufferers.

There's a lot to say but I 'll keep it brief for now.

I take cybalta for neuropathy which seems to work better than gabapentin for that elevator feeling and I could drive with more confidence.

I take 50mg. of tramadol 2x a day for pain, but doesn't reallly help anymore.

Last night I took a Vicodin instead and felt a bit better for awhile.

I take medical marijuana on occasion which helps me get over it, temporarily.

My doctor in NYC told me I have spinocerebellar Canvas, an inherited type and my sister definitely has a similar condition. Other family members are ok, well let's just say they don't have this.

I walk and wobble and practice PT exercises. I am gluten free by choice. My speech is unaffected but I cough sometimes incessantly when eating......never knew why before Canvas.

I am 64, an artist, and live with my husband in upstate NY. I am grateful for the good life I have but future looks grim. Planning things to look forward to are key. Invited my son and his wife to drive me around the west coast of Ireland next fall. Any recommendations on where to go?

Let's chat!

Michelle from Woodstock NY