Nerves not working anymore!

[ww-wibblywobbly]

Hi all,

Last week I spent a day at hospital to have some tests and blood tests to try to get a clearer diagnosis. I know that there's probably no treatment even if I know more but I'd like a full diagnosis in case any of my children ever want to be tested.

Anyway while in the hospital I had an EMG on my hands, arms, feet and legs. I had one previously 11 years ago. 11 years ago they came to the conclusion that my nerves could all work fine, it was a problem of the message from my brain. But this time the nerves in my feet and lower legs don't work properly anymore and I have lost a lot of muscle in my legs.

I was aware of the muscle loss, but the nerve problem was a surprise to me. Does anyone know if this is normal with ataxia?

They are testing me for some different types of ataxia and also Charcot Marie Tooth illness.

Any information is much appreciated.

Thanks xx

[MSW_91]

Hey

I am no expert but I also have nerve damage (a sensory neuropathy to be specific) and this was diagnosed through an EMG before I received my ataxia diagnosis.

The neurologist I was seeing at the time said my neuropathy was either an isolated issue causing my balance issues, or it is associated with ataxia. A few months later I was then diagnosed with FA, and sensory neuropathy is a symptom.

I think some other ataxias also have an associated neuropathy.

Take care

Matt

[ww-wibblywobbly in reply to MSW_91]

Thank you for your reply. I know that I don't have FA as I have been already tested for that. I shall have to see if they find out from the blood tests if they find my type of ataxia. I feel a bit better now I know some types of ataxia have this - I was wondering if I have something else!

[PatsyIpswich]

Yes as I understand it, my nerve damage in legs and feet are typical in cerebellar ataxia. X

[ww-wibblywobbly in reply to PatsyIpswich]

Thanks Patsy, you have helped put my mind at rest a bit. Can I ask what type of ataxia you have - if you know please?

Xx

[PatsyIpswich in reply to ww-wibblywobbly]

Yes I have idiopathic cerebellar ataxia x

[1940girl]

I am the same, I have neuropathy in my fingers, feet & lower legs, I had an EMG test which confirmed the nerves weren't working properly and I was told it is part of ataxia but everyone is different.

[ww-wibblywobbly in reply to 1940girl]

Thanks for replying. Can I ask what type of ataxia you have please

Xx

[1940girl]

I have cerebellar ataxia which is the main part of CANVAS that I have been DX with.