She was officially diagnosed a year ago - after many years of neurologists calling her a "mystery" - and now that we have a name for what's happening to her, we are just as in the dark as we were before.
As CANVAS is a "new" syndrome and extremely rare, it has been hard to know what to expect and the best ways to manage it.
I've read up as much as I can online and have an understanding of all that she is going through, but I'd love the opportunity to speak to other CANVAS sufferers so that I may better support my mum and possibly find better ways to manage her symptoms.
Right now she is experiencing imbalance, lack of sensation in her arms, legs and face, ataxic gait, headaches, lethargy, dry skin and mouth, cold limbs, pain in her legs at night, some vagueness when interacting followed by moments of total clarity, falls, trouble gripping or holding objects and digestive issues.
I know CANVAS is very rare and I have a slim chance of connecting with others on here but I figured it was worth a shot!
Thanks for reading and best of luck with your own journey
Written by
17KGB
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I was diagnosed with CANVAS about2 years ago and several of your mums symptoms are the same as mine, but not all of them. One you don't mention is eye sight Because my sight is not good I no longer drive. I have delayed focusing, dizzy head and tinnitus. I now use a wheelchair all the time in the house and a scooter outside. my balance problem is all the time hence the wheelchair!! I don't have any real pain( perhaps i am a pain though!?!). I have very cold legs & hands at night
I am very lucky in having a wonderful wife and in the main we keep very cheerful Obviously we can't do the things we used to do but perhaps that is due to Brexit. Ha Ha. Ha
If you want to e mail me anytime please feel free to do so
(Not sure how to do this but I will phone Ataxia UK and ask their advise
🙂 Earlier this year a new (to me) Neurologist said he would refer me for the test re CANVAS. BUT..as yet I haven’t heard from anyone. Although my DNA is on file and I may hear something eventually.
My long-standing problems have mostly been Vestibular (since the mid 1990s), but balance is becoming much worse and I’m constantly concerned about falls.
As a rule I also experience most of the general symptoms associated with ataxia, and most of them are challenging but can change. Involuntary swallowing can catch me unawares and lead to choking, but as yet I haven’t felt it necessary to ask to be referred to a Speech and Language Therapist for advice on swallowing techniques, or adding thickeners to food or drink.
Tongue biting is something that happens often to me, and for some reason it’s always on my left side..my tongue just seems to get in the way of chewing food 😬
It’s only this last year or so that I’ve noticed pain creeping in. Knees, backache and general muscular discomfort. And, I’m noticing my grip isn’t as positive as it used to be, opening bottles, jars..and even prising the top of a butter carton is becoming very awkward. Carrying or lifting anything heavy or unwieldy can be out of the question, my muscles just can’t take it anymore. This is particularly frustrating at the moment because we’re about to move house, and my daughter has a new baby 🙂
Fatigue seems to hit me in cycles, possibly triggered by stress of one kind or another. Multitasking is one thing I’ve come to recognise as a trigger. When it does kick in, I find the only way I can deal with it to try and totally relax and ‘zone out’ until the tiredness or ‘brainfog’ lifts. Sometimes this can take days, but really the only option is just to go with the flow.
In the past digestive issues, such as acid reflux have been a nuisance, and I was worried about Heliobactor Pylori. But after a Endoscopy nothing untoward showed up, and I’m now more careful about my diet and try to avoid possible acid reflux triggers.
Possibly getting into the realms of too much information, but it’s a subject that troubles many of us.. bowel regularity. I know from experience being immobile for much of the day, combined with insufficient roughage, can quickly cause discomfort and a problem. Recently I had a Sigmoidoscopy because of rectal bleeding, nothing sinister was detected, but the Surgeon impressed on me the need to avoid constipation. So, fruit, veg ,more drinks of water, and less time spent on the sofa 😉
I found that by adding a smoothie full of greens greatly helped me with regulating my bowels. Recipe is: 1 cup variety of greens (whatever you have, kale, baby spinach, lettuce leaves, parsley , dandelion or chicory, chickweed, etc), a bit (about 1/4 - 1/2 cup) of coconut cream (for the fat and flavour), about 1 cup coconut water, 1 cup mixed berries (lots of blue berries, some raspberries, some strawberries - again whatever you can get hold of). You can add clorella and/or spiriluna (no more than a teaspoon to start, as these are very strong), hemp and/or chia seed, or whatever 'super food' takes your fancy.
The important bit is the cup of greens! Wizz and enjoy daily!
For cold feet and legs at night, I sleep with a hot water bottle at the bottom of my bed. I find it warms up my feet and I drift off to sleep quite quickly with it there.
🙂 Thanks for that tip Poppy! Making roughage interesting isn’t always easy. And, since you mention cold feet..how could I forget 🥴 The only time I didn’t have my hot water bottle was in the height of summer when we actually had a heat wave 😉 I totally agree, having warm feet makes such a big difference, and I have to confess to also wearing bedsocks as well😂
I noticed with my mum that salads had an immediate reaction for her bowels. I would really love to see if a gluten free diet would help at all. Have you tried anything like that?
Hi 17KGB, sorry I took so long to respond. I am gluten free and lactose free, and have been both since the end of last year, no changes though.
The cause of my ataxia is unknown, at this stage. First round of genetic testing revealed nothing, going through round two atm (they are testing a further 150 genes).
My doctor suspects it is caused by a virus, hope he's right for the kids sake! Should have genetic results by xmas, when it has been going on close to five years by then.
Poppy, that sounds frustrating! I asked mum if she had her genes tested but she doesn't remember. She has had a lot of tests along the way too. Hopefully your kids will have nothing to worry about - I'll cross my fingers for you
Where in regional Aus are you? We are in the Hunter Valley region in NSW.
Mum was in the hospital all last week and came home on Friday.
She had been feeling nauseous and would experience vertigo when turning in bed. She said she had an ongoing headache and couldn’t eat or drink.
She managed to come good after a week in hospital but I can hear her morning in her sleep as I type.
Mum uses an electric blanket and it tends to dehydrate her. But she feels it’s the only thing that relieves her back and legs of pain.
She has often mentioned her stomach feels full after drinking a little bit or eating a small amount of food and she can’t force any more down. Does that sound familiar to you at all?
She has been given a range of vitamins to take since being in hospital and luckily my father is a chemist (more of the agricultural kind) and understands what you can and can’t put together to get maximum results. Making sure certain pills aren’t cancelling out others gets a little tricky. Other than that though, mum has to keep battling on.
She had an appointment with the neurologist on the 9th and I’m hoping by some miracle they have more information they can give us.
I really wish there was something I could do to help. I don’t think she really appreciates me trying to thrust myself onto her. I can imagine it must be scary observing the changes, enduring the pain and wanting to be independent all at the same time.
It’s really exciting your daughter has had a baby!
That must be bringing you so much joy!
It must be frustrating not to have any answers as yet from your neurologist.
We are in Australia and it took 7 years to get answers for mum.
🙂 I hope your Mum gets some relief soon. Some ataxia types are plagued with headaches and vertigo, and it doesn’t help balance 😕 There are Medications to try for various symptoms, I tried something myself for BPPV ( vertigo turning in bed) but it seemed to trigger something else so I abandoned it 🙄 When I’m especially tired ( as now with the new Mum and baby), my symptoms always seem worse, at the moment balance is particularly bad, and my speech is very slurry.
I can imagine how frustrating it must be for you, and I’m sure your Mum greatly appreciates your concern. It is confusing and stressful coping with the challenges ataxia throws at you, and it can be very difficult, sometimes impossible, to try and convey what the symptoms feel like.
i’m a member of a Facebook Ataxia Support Group, and 2 of the moderators live in Australia ( in case you’d like to speak to other Aussies 😉).
🙂 Members of Facebook groups are spread all over the world, but there are a few people in isolated places of Australia. And, there are quite a few ataxia support groups on Facebook, it’s certainly taking off 😉 The group I referred to is..Spinocerebellar Ataxia Awareness and Research Group. But, just by typing in Spinocerebellar Ataxia will produce links to a variety of groups. There are lots of people with the more common types of SCA, lots of people who are still desperately keen to get a diagnosis, and less well known types are creeping in, but currently CANVAS is rarely mentioned 🙂xB
I’ve had CANVAS for over ten years and it is, to put it mildly, horrid!
My neurologist has told me that there is no treatment or cure for this condition, when I asked what I could do, he told me to be as stubborn as I could and keep fighting to do what I could.
I use a four wheeled walker around the house and garden and walk, albeit slowly, as much as possible. Sadly I am no longer able to drive so for the first time since I was 17, I no longer have a car (I’m 82) and that was a real blow but there is a Bootmaster mobility scooter that lives in the back of my wife’s car that I use when we go shopping or similar and I have an Invacare Comet which has a range of over 25 miles which I use for walking our dog, shopping on my own, running errands etc, so I’m still somewhat independent!
Apart from the loss of mobility, sensations it’s the pain that comes with neuropathy that really gets me as it can happen at any time - but Gabapentin helps.
I live in Gosport, and if there is anyone in my area, it would be great to meet up.
Hi, I was diagnosed in February this year. I seem to have the ‘normal’ symptoms of RFC1CANVAS. Poor balance, poor coordination, poor spatial awareness, bad cough, problems with bowles and bladder. That is the usual stuff for this condition. I also have a number of other issues because my peripheral nervous systems has failed. Please give your mother my best wishes.
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