Diagnosed with Large fibre polyneuropathy in 2021 but symptoms have progressed more towards CANVAS. Is anyone familiar with it? Stands for Cerebellar Ataxia (CA), Neuropathy (N) and Vestibular Areflexia (VA). There is a genetic RFC1 type and one without a genetic type. I have positive Rhomberg and loss of proprioception.
The vestibular connection blew me away as do the other symptoms which mirror this true life condition. I fear I’ll never get a diagnosis in Canada due to specialist shortages and it’s estimated only 5 people in 1 million have this. I’m at a loss trying to figure out how to go about getting a diagnosis. Any support would be greatly appreciated.
🙂 I too have many symptoms similar to CANVAS..but the test was negative (I’m in the UK). Even if the the test had been positive..there is no cure, only supportive therapy and medication for specific symptoms.
I have general ataxia symptoms, but my Vestibular issues outweigh these…these symptoms ‘persuade’ me to sit still far too much to alleviate the sensation. But immobility makes the situation worse, it leads to stiffness and pain and the chance of falls is far greater.
Thanks for your reply. Your vestibular issues sound like mine. It overshadows my life intensely and have not been investigated yet. In fact the neurologist seemed to bypass any comment about the pressure in my head and around the eyes. I never connected it to anything vestibular. Don’t know how they could test genetically with both parents gone now.
Just thought about the CANVAS symptom of constipation. Even though it got worse over the last few years now it takes a pill twice a day to undo it, a pill prescribed for hiatal hernia that causes diarrhea. Without that I would be at a loss. Some days I can only take one pill but what a relief to actually have BM.
Wondering if everyone with CANVAS has this symptoms as most of the literature mentions it.
I’ve had longterm problems with constipation myself..and I’ve been told this can have a knock on effect causing urinary frequency…another problem. I was given Laxido to try..and also make an effort to drink more whilst eating.
I received confirmation of my CANVAS diagnosis this year, 2 years after submitting my blood for genetic testing. My neurology consultant at Walton Hospital, Liverpool organised the test because he suspected CANVAS. My sensory neuropathy started 18 years ago when I was 52 and slowly progressed but my balance problems only started 8 years ago and have gradually got worse. Nystagmus is another symptom, and slurring of words. A common symptom is a dry cough often predating neurological symptoms and I have suffered from this from the age of 30. I have been seeing consultants for 18 years and have had nerve conduction tests 3 times. You don’t say your age or how long you’ve had problems but they seem to have come on rather quickly compared to mine. You really need to find a consultant neurologist who will assess you and decide whether it is appropriate for you to have the test.
See the last post by Oroklinibabe. The symptoms were there but it’s taken years to figure out what was happening. Thought I had Parkinson’s because of tremors in my head and upper chest. Also have intention tremors in hand that aren’t noticeable. I’m 72 yo. So in 2015, but I think before that as well, I noticed some things. I had a knee replacement, then a year later thyroid cancer and so three successive operations took my mind off of the symptoms. Lots of fun.😬
Got a call from my GP. She’s referring me to a neurologist. Probably have to wait a year but at least it’s something that might help me understand what’s going on.
If you get a chance to answer this question I’m wondering if lack of proprioception is caused by vestibular issues. This is my experience: I don’t know where I am in space….get lost all the time when I used to have a good sense of direction, my eyes seem to always be looking at things in a way that I honestly don’t recognize people and places and don’t connect them to things we’ve done together, at least right away. I look at things that are right in front of me and don’t see them. In the dark I am even worse…walked into walls even though a night light was nearby. Nearly had two accidents driving at night but now I don’t drive when it’s dark often and definitely not in winter. My night driving vision has improved though.
I moved to a small new town and drove to a street one way and in my mind I couldn’t revert to the new way I found later that was shorter. It always seemed like I was on the first way I took to get there. It’s getting better now but I always feel lost. I got off a plane about 2 years ago and even though I knew the city I arrived in was inland I asked someone how close we were to the ocean. Felt like such an idiot but I couldn’t place where I was on the map. Is that a symptom of VAS that is common because I read that not recognizing people is part of it? It seems connected to my eyes rather than inner ear.
I thought I might have the beginnings of dementia but after reading about CANVAS, the VAS part sounds familiar. I just thought it was proprioception loss.
I’m sorry to hear about all your health problems. I hope you can get help. My proprioceptive loss was the first sign of my neurological problems and it started just in my finger tips. My doctor suspected carpal tunnel syndrome but subsequent nerve tests showed that I had Polyneuronothapy and that the nerves in my feet were affected too. I was able to continue an active life and it was ten years before the ataxia started. The vestibular problems became noticeable about 2 years ago. The dizziness when walking is helped by using a walker. I think everyone is affected differently when it comes to neurological problems and I don’t think doctors have all the answers. They offer prescription drugs for nerve pain that have side effects. I often get random stabbing burning pain but I don’t want to take drugs every day. Theres good days and bad days.
Yes I agree. I try not to have doctors prescribing me stuff. I'm very sorry to hear about how dizzy people and you are with CANVAS but each one has his/her own plague and I am otherwise a happy person and keep busy every day. I was asking about the spaced out feelings that seemed unusual until I read it but can't recall which website.
So just call me spacedout instead of rideabike because there is no way I can ride a bike now. 🤣🥴 Take care
I agree with wobblybee that the diagnosis doesn’t make any difference, although my symptoms are no longer considered ‘ idiopathic!’ The important things are supportive therapy and (patsyipswich) to stay safe and smile. The best therapy is exercise and I try and keep up yoga and tai chi even though my ataxia means I can’t do certain exercises now. I no longer go out of the house alone. I gave up driving last year because I didn’t feel safe and I do a yoga and tai chi class by zoom. I walk with husband and use my 4 wheeled Walker and try and do short walks 3 times a week. I can no longer walk with sticks or poles. The physio at Walton advised me to try Cawthorne-Cooksey exercises to help with vestibular problems and you can find info. about these online. Best Wishes.
🙂I’m seeing a NeuroPhysio..and she also had me try Cawthorne-Cooksey exercises. My Vestibular issues started in the late 1990s,..and I have an additional eye imbalance, so not much luck with the exercises.
So..we are now focusing on maintaining mobility..strengthening core and keeping joints flexible.
Yes I agree I don’t need a diagnosis but just want a neurologist to see the progression happening. It’s scary….especially gastro problems. I do watch where my feet go before stepping anywhere and it sure helps because falls have not caused much damage. I fall in the most awkward positions but usually trying to do something in the garden so it’s a soft landing. 🌾🌹🌺 🌿☘️🌱
I have CANVAS which was diagnosed by genetic testing at the hospital I go to in London, I have poor balance and am dizzy all of the time, I have the cough that so many of us seem to have which started long before my symptoms did, I have had EMG's to confirm neuropathy in both legs and feet, I don't have nystagmus and my speech is fine, I hope you can find a neurologist that can put you forward for testing, could your doctor put you in touch with someone, I wish you well and really hope you get some answers.
Thanks for the reply. Does your cough come and go? Years ago I noticed a cough but it comes and goes. Tickle in the throat or just coughing but not a terrible distraction for me.
No, the cough is constant, I don't ever have a day when I don't cough, it's a tickley cough, I hate it but I can't do anything about it unfortunately, glad yours is not all of the time.
Started with loss of proprioception around 2015, then loss of balance and disordered feeling when I walked which includes heaviness in the legs. My head always feels a type of pressure inside and around the eyes that never went away. Reading became difficult. Hands clumsy, Had vertigo but that went away and now occasional dizziness. Have ocular dysfunction and slow saccades, over and undershoot…diagnosed by a vision therapist. Diagnosed with large fibre polyneuropathy with ataxia. Peripheral neuropathy in hands and feet, left knee stiffness. getting worse lately by the day almost because had trigeminal neuralgia, Raynaud’s and Morton’s neuroma in one foot all in space of a month. Gastroparesis that makes me vomit now. Eating is a slow digestive nightmare becoming worse in the last year or so.
Sorry it took awhile to respond. Last few days were bad.
Sorry…trigeminal neuralgia in head and face, Raynaud’s in fingers of hand, Morton’s neuroma in right foot for months before but progressed. All peripheral neuropathy symptoms.
Additionally I had a swallowing assessment in 2017 that was positive for decreased tongue based movement. Now it has progressed to slow digestion (gastroparesis) as it did back then and now. Takes awhile to actually figure out what is happening. I always felt it was parts of a syndrome but doctors just want to hear one symptom at a time and deal with it.
Also had several Echocardiograms that were positive for ?? No f/u appt. done yet. Angiogram didn’t show a blockage and I think it’s part of this….maybe autonomic. I am very sensitive to heat and cold.
I really appreciate all the input. Talking to my GP tomorrow and hopefully she’ll refer me to a neurologist. I moved to a different province and haven’t got one yet.
Hi, UCLH suggested I had CANVAS. But when I looked up the symptoms, unilaterally vestibular hypofunction, I only had it in one ear, chronic cough didn't have that either, so we talked about referring me to Sheffield where they specialise in autoimmune ataxias and I have gluten ataxia. These referrals took 2 to 3 years. Have now been gluten free for 3 years. The ataxia symptoms have stabilised but not gone away. I have eaten gluten all my life so permanently damaged the cerebellum.
I think having a definite diagnosis is not necessarily helpful, it is a "label" that might well lead some to 'self fulfilling prophecy'.
We are all different, are effected differently by ataxia and as I understand it proprioception is a symptom that goes with ataxia. So does temperature intolerance.
The feelings and pressure you have in your head and face sound a bit like sinus congestion or migraines to me.having migraines for 20 years you can feel like this in your face and head., and like your body has been poisoned. Some people dont have the awful headaches. As for peripheral neuropathy, loss of feeling in my feet and legs, like you i used to feel that i was wearing tight socks all the time, even if barefooted, can I believe be another symptom of ataxia.
Have some faith in yourself, don't rely on neurologists all the time because they don't have all the answers. Perhaps in 10 or 20 years time diagnosis and treatments will have improved.
Maybe read research and review papers this could give you some answers.
Thanks so much for your response. I don’t really expect to find a diagnosis. I just have some bizarre symptoms that I wondered if anyone else had. I too am gluten intolerant and went off of it in 2012. I strictly eat without it. I was never tested to find out why I have ataxia. Anyhow the feelings in my head came on slowly around 2015. They’re very specific but I have never found anyone with the same spaced out kind of symptoms. I wish it was as simple as a migraine or sinus congestion. Have had that before. Thanks again. 🌹
Hi there. I too have the "spaced out" feeling and an inability to recognise faces unless they have some distinctive features such as hair colour or wearing glasses. I have felt like I'm in a dream and detached from reality since childhood but put it down to the trauma of losing my father when I was 12.
I started overbalancing/falling in my early 40s. I was diagnosed with cerebellar ataxia about 3 years ago but genetic testing has so far failed to identify which type.
I have random shooting pains in my head also those awful "brain shocks".
My eyes are affected and I feel so tired all the time no matter how much sleep I've had.
Also had that irritating cough since my 20s (now in late 60s)
Do you find people are understanding or look at you as if you're making it up?
Thanks for confirming my symptoms and describing it. I’ve been baffled since 2015 by it. It’s a really disconnected feeling and rare I think. Sorry about the long years of this since childhood.
Yes, I think my doctor thought I made it up. He diagnosed me with ataxia but did no further tests. Maybe he thought I was out of my mind.…not sure. The tiredness in my eyes is exactly as you described with fatigue.
I wondered if I had fluid on the brain. No one has done a test of CSF, cerebral spinal fluid. It could answer a lot of ?? Janice I can say for sure I know what you’re going through…if that helps. You’re probably younger than me, I’m 72, but ataxia doesn’t have age boundaries.
The one thing I’ve noticed is the brain compensates for some symptoms over the years and maybe forms new pathways….which is marvellous. We just keep plugging along and there are a lot of courageous people with it. Hats off to all. Your post has given me hope.
Hi all,My ataxia became obvious in 2014 and finally got a CANVAS diagnosis in 2021 via genetic test. I'm now 52, have had cough since 26. My vestibular issues became troublesome in 2021. Found vestibular physiotherapist via my cousin who is also a physio. Helped hugely, gaze stabilisation exercises and lots of walking while moving head. I do yoga 4/5 times a week and try to get out for 30 min walk as often as I can, this is getting trickier though. I currently manage with a stick. I found the vestibular therapy very helpful and helped give me the confidence to get out for walk by myself.
For me the fatigue is the most annoying thing but a daily nap around 2.30/3 helps keep me relatively sane!! Although ataxia is shit it could be worse.
I must have missed your kind reply that you posted 9 months ago! How have things been going for you since then? I read up on CANVAS. The daily nap sure sounds familiar. Reading is insanely frustrating because my brain and eyes tire too quickly but I persist. I wondered about vestibular dysfunction but it’s not been checked out. I did have some vertigo for years but not often now. Comes and goes.
Sending Prayers, After my husband Stroke diagnosis in 2009. He was put on Thrombolytic therapy and after some time on therapy he didn't feel any different, so we started on a Stroke Ataxia treatment protocol from Natural Herbs Centre ( naturalherbscentre. com), the treatment effectively treated his Stroke condition. The slurred speech, muscle weakness, has subsided, he’s learning to write again. Its almost like a miracle!
I’m sorry I missed your post Katherine, and so long ago. I appreciate all who reply but sometimes when going through this I seem to retreat into never land for awhile, to cope. It’s wonderful to hear a success story! I hope things are still moving forward for him and you.
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