CEREBELLAR ATAXIA 'CA' diagnosis with no known cause

Hi - just wondering how many of us have CA with no known cause.

Personally I havent needed to give up work as I retired at 60 and therefore havent experienced the frustrations of younger people.

However I do share other frustrations of needing a diagnosis and indeed a prognosis. To be frank, I didnt know what prognosis meant until my brother asked me what my prognosis is!!

I was originally told that I have Cerebellar degeneration which simply put, meant that I had shrinkage of the back brain. This would cause problems with relaying messages to front brain - the tracking - but the good news was that I dont have MS and my CD would be slow progression.

The only thing I could do would be to eat healthily and exercise regularly.

I looked up CD on internet and subsequently discovered this is now known as CA.

On reflection, I have always been 'clumsy' but wasnt bothered about it until my late 50's when I started having falls. I thought this imbalance was due to my big toe growing inwards.

I consulted my GP and he referred me to a surgeon who did a 3 part operation to straighten my right foot. It was during recovery tat the physio commented on my gait and referred me to GP to request appointment with neurologist.

I am no under the London Ataxia Clinic but still dont know my prognosis.

I now run a local support group and have found that they all had a 'trigger' for the sudden progression on their ataxia. Such things as divorce, bereavement, virus, brain tumour, stroke - my trigger was my foot operation.


CA/69/Ipswich, UK

Hi I have Ataxia with no kown cause although it was probably caused by Measles at 12 mths old. Of course my Ataxia gets worse with illness and tireness although I am mindful that my body is ageing too so everything can't be blamed on Ataxia. I am positive about life and I think this has helped me through bad times. I like to challenge my body and try different things I like learning new languages and have found if I 'put on' a accent or tense my fuzzy speech is generally better. I just bought a vibro plate exerciser which has helped my balance and increased my circulation. The medical profession don't know what box to put me in so I carry on regardless, and for my sins still working supporting adults who have endring mental ill health although I'm saving to retire at 50 , life's to short.


that's Brilliant Sarah - be proud x

Thanks but never thought about it like that but, hey why not blow my own tumpet

aw - you are not! just sharing x

Hi Everyone

My partner Anthony has Oculopalatal Tremor with Cerebellar Ataxia all of unknown cause. He has had this about 11 years now and just appeared out of nowhere he's 65 now. One day he noticed his balance feeling strange. After visiting G.P then being referred to hospital for tests etc things weren't looking positive as this "condition" had never been seen or heard of. After being told nothing could be done for him ( he was prescibed various drugs, mainly used for epilepsy ) none of these did any good by the way. He now goes yearly to the National Hospital in London and sees a movement disorder specialist. We cannot complain about this hospital, Anthony has had many, many tests to rule things out. But still cannot find cause, so therefore no form of any treatment. He does keep positive though, and copes the best he can. I think that has to be the answer for now, to anyone, do try to not let this get you down too much. Live in hope that one day research will come up with something to help.

Best Wishes


thanks Judith - that sounds all too familiar - was there no 'trigger' in Anthony's personal life? Please give him our good wishes. He is lucky to have an understanding wife. take care, Patsy


I have CA and find that I read a lot of information from the Foundations that there are several causes. (I read a lot.) But my neuro is good and has helped in many ways.

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I have CA and the doctors have done all kinds of tests with no conclusion of the cause. I think about 60% of CA cases have no known cause (which might mean that we do not know enough about hereditary conditions and don't know the required genes to test)

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In 2008/09 I had an operation to place an implant on my head to allow me some hearing in my right ear. This was origionally due to a road accident when I was six years old. Oddly enough a short time after this operation I began to experience more profound balance problems. I cannot say for sure though that this was a trigger for my balance problems getting worse. Medical professionals know about this but have not mentioned this to me as a possible trigger or cause. What I do know though is that my ataxia symptoms have worsened since then. Unless I can obtain more evidence I cannot say what, if any triggers have caused my ataxia to worsen. The mind boggles!

I wonder if the neurologists are reluctant to attribute 'blame' for a trigger in case it develops into legal action!

My concern has not to attribute blame but to discover whether I have an underlying condition that can be treated.

I have had muscle biopsy and they say there is definitely something wrong but they dont know what - rheumatologist told me [having treated me for Lupus for a year] that she considered my muscle problem to be caused by ataxia and the bodies need to compensate for my 'movements'.


Funnily enough my ataxia came on after a lot of stress from teaching.I had just given upthrough choice not because I had to.

I couldn't cope any more.


My Neurologist and a geneticist have both said that.Awaitng results from a whole genome test and that was over two years ago. Meeting due in April with Neurologist.

Sentient SF said:

I have CA and the doctors have done all kinds of tests with no conclusion of the cause. I think about 60% of CA cases have no known cause (which might mean that we do not know enough about hereditary conditions and don't know the required genes to test)

good luck for April Marie - I find these results appointments very disheartening but ....

Not much hope for the future but I would like a fuller label and to know if there is anything i can do now.


ps thanks for the good wishes.

I agree. x

Look at this abstract from the link below Patsy. It explains the meanings of Ataxia/Degeneration/Atrophy. I found the whole web site quite interesting.


oh gosh yes! Thanks Iain - I read that several years ago and at least once more since - it is very interesting - I wish I could 'retain' more of what I read.

Concentration and memory are of course mentioned in this article.


Thanks Iain

The website certainly is informative and explains to me lots of things.From what I can gather is that some of us have cerebellar degenaration . There are several causes but if we have a degenerataive disease then ther is nothing we can do.Various diets could help us with general health and exercise is goodfor muscle strength if we have a choice.I have got a scooter recently and I have choices.I have to weigh up whether it is good for me, will it give me exercise,will it give me greater indepedence,am I being lazy and taking the easy option, willl it keep me safer etcThere are advantges and disadvatages.I think the greatest thing to work on is acceptance. I am lucky at the moment I have choices. The website explains the effects of cerebellar disease some of which i have got, some not yet and some I will not get.My phi;sophy is that each day we are given is a bonus.It is not a fair world.There are some things we can change and others we can't- we must aim to make it a fair world if we can.It is the quality of our life not the quantity.Some people can seem to have so much but do they??

It's funny the way we concentrate our thinking.


Very true - My sister just 18 months older than me died of ovarian cancer a couple of years ago and one of my dear friends, Iris, died year before last of Motor Neurones [just 6 months from diagnosis] - I have online friends who are deaf or blind and some very young ones who cannot walk.

I count my blessings every day and so thankful that we have these forums to share our feelings.

Patsy x