Do you think having an idiopathic (unknown cause) cerebellar ataxia is a diagnosis or do you consider this to be 'undiagnosed'?

[HarryB]

[Hidden]

I was told by a professor in Neurology that Cerebellar Atrophy/Degeneration, (which in my case is idiopathic) is a diagnosed condition in the same way as Parkinsons disease, which is also idiopathic (the cause is unknown).

I think an unknown cause of ataxia would be considered as a general diagnosis and an ataxia with a known cause would be considered as a definitive one I would imagine?

[HarryB Administrator]

I have an idiopathic ataxia as well Iain. I do consider this to be a diagnosis but the fact the cause is as yet unknown means this diagnosis is not very specific and, as you say, is rather general.

[Fifa Volunteer]

Hello Harriet

I to have idiopathis CA. I take this as a diagnosis not the cause. To my mind it really doesn't matter what the cause is I have Ataxia and that is that. Kowing what caused it will not make any difference. I wish it would..

Tske care

Fifa.

[HarryB Administrator]

Hi Fifa

There was a study in Manchester recently-The Care of Ataxia Patients or COAP study- that revealed quite a high number of people who have an idiopathic ataxia consider themselves to be 'undiagnosed'. I completely agree with you though. Knowing the cause of my ataxia would make absolutely no difference to my daily life-learning to live with it, managing the symptoms and maximising the function I have now is far more important.

Harriet

[Hidden]

I agree with you both. For me I think its more important knowing what type of ataxia you have rather than what the cause is.

[Mango1983]

Are you confirmed because MRI finding showed cerebellum changes?

My son has ataxia, amongst other symptoms, and is undiagnosed. His MRI and all tests are normal.

[HarryB Administrator in reply to Mango1983]

Hi Mango1983

I was diagnosed with a cerebellar ataxia before I had an MRI scan. There are a number of signs of cerebellar damage which are elicited on physical examination by a doctor. I have them all. This confirmed that my ataxia is cerebellar in origin. The fact I had cerebellar atrophy on a subsequent MRI scan was no surprise.

Best wishes

Harriet

[Mango1983 in reply to HarryB]

Thank you for your reply.

All of his signs symptoms point to cerebellum ataxia. But his MRI is normal. His neurologist says his a mystery. Which isn't helpful. We are seeking a second opinion