Confused about definition of Ataxia

Hello everyone - I'm new to posting but have been a member for a while.

I'd like to ask whether any members have severe problems with balance but have not been diagnosed with the label 'ataxia'. Having seen several consultants for severe balance problems I've gathered lots of 'labels' but not this one and I'm now confused as to whether apart from hereditary ataxia - the diagnosis of 'ataxia' is a generalised description for balance problems rather than an actual condition unto itself?

I'd be interested to know if anyone has been given any of the following diagnosis apart from ataxia or whether ataxia has been seen as part and parcel of another condition.

ME with Fibromyalgia

Meniers (atypical - constant balance problems but no hearing loss)

Basilar migraine

I have severe balance problems, use a wheelchair 24/7 - it all started during a severe ME relapse and after cluster vertigo attacks.

Thanks any feedback much appreciated

12 Replies

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  • Dear gilonius

    Thank you for your question. The word 'ataxia' is greek and literally means lack of order. Somebody with ataxia has difficulty with balance and co-ordination. It is caused by damage to a part of the brain called the cerebellum which is at the back of the brain and can be thought of as the body's 'balance box'. Ataxia is a symptom of many different disorders/conditions but confusingly there is also a group of disorders called the Ataxias of which ataxia is the main symptom.

    I hope this helps your understanding but do please get back to me if you have further questions.

    Best wishes

    Harriet

  • I had balance problems for many years before the diagnosis of ataxia was made. ME was considered and I actually attended a clinic for this. I spent money on a course which was developed to help ME sufferers. I also went privately to consultant in London who specialises in balance problems ( all to do with the ears). He admitted he could not help. Eventually referred to. Professor Hadjivassilou at Sheffield who confirmed ataxia. Have since been diagnosed with gluten ataxia and am currently awaiting results of genetic tests.

    Balance and co-ordination, eyesight (nystagmus), speech are all affected. I live alone and it gets increasingly difficult to manage. Showering and washing hair very hard.

    Best of luck.

  • My friend is also under the professor at Sheffield and since occupational health got involved he has received a chair for his shower, plus hand rails and rails for the toilet, which has made life a little easier for him as he also lives alone.

    Once you get yourself into the care system it is a lot easier to get things that help your day to day existence and if at first you don't succeed then please persevere and you will get help to make life a little easier. If you don't ask then you don't get!!!!!

  • I have all these things. Recently had shower re-fitted with handrails, seat etc. still very difficult. Wonder what the next stage is!

  • I am not sure where you go after having these appliances, but will keep you informed on what happens next with my friend and if there is any more help available I will let you know.

    Sorry I can't be more helpful.

  • Thanks Sammie.

  • "It is caused by damage to a part of the brain called the cerebellum"

    Is this the only cause?

  • Hi fbirder😊

    I hope this helps 🙂

    Ataxia can be -

    AQUIRED as the result of head trauma, stroke, brain tumour, a severe viral infection and exposure to certain toxins or drugs.

    INHERITED by a gene defect or mutation.

    SPORADIC OR IDIOPATHIC cause unknown, no family history.

    Diagnosis is usually made after MRI - Genetic Testing - Family History - Clinical evaluation by a Neurologist - Laboratory Tests.

    😊xB

  • Have balance, clumsiness and speech probs. Still undergoing tests. MRI end of this month.

  • Good luck.

  • Hello there - thank you for your replies.

    I'm still a bit confused as this seems to be a bit of a grey area. Would a consultant have to see evidence of damage to the cerebellum (On a MRI scan) to make a diagnosis of 'ataxia' - or can you have ataxia as a result of other conditions in a more general sense indicated by problems with balance/co-ordination?

    Re - the use of aids - occupational health have been really good- they will do all they can once you're in the system and ask for help.

    Wishing everyone the best in coping with these difficult challenges.

  • there are different ataxias. mine is cerebellar ataxia and still trying to find the cause. will be trying autoimmune. Mine is not genetic. it is a difficult disease to live with. sometimes you feel so limited. at the moment i'm using a walker to get around. Not able to use the trains and the buses can be work as I can get on them but harder to get off. hope they can help all of us in the end

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