CEREBELLAR ATAXIA 'CA' diagnosis with no known cause

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Permalink Reply by Sarah Lacey on February 10, 2012 at 6:55am

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.

 

Sarah

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Permalink Reply by Patsy on February 10, 2012 at 7:16am

that's Brilliant Sarah - be proud x

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Permalink Reply by Sarah Lacey on February 10, 2012 at 7:25am

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

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Permalink Reply by Patsy on February 10, 2012 at 7:32am

aw - you are not!  just sharing x

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Permalink Reply by Anthony Hazel on February 10, 2012 at 8:03am

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

Judith 

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Permalink Reply by Patsy on February 10, 2012 at 8:40am

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

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Permalink Reply by Jane Stephens on February 10, 2012 at 12:07pm

Hi,

 

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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Permalink Reply by Sentient SF on February 10, 2012 at 12:19pm

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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Permalink Reply by Iain Stevenson on February 10, 2012 at 1:24pm

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!

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Permalink Reply by Patsy on February 11, 2012 at 11:29am

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'.

Patsy

 

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Permalink Reply by Marie Turner on February 11, 2012 at 4:25pm

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.

Marie

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Permalink Reply by Marie Turner on February 11, 2012 at 4:32pm

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)

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