Hi ya I would like to ask a question not sure if anyone can help?just forgotten it don't you just hate that!i see a neurologist

[maber]

Start again lol I see a neurologist who says i have SCA she doesn't know which one i have as i'm a bit of this and a bit of that . I only get to see her for short visits 2 times a year , how do i go about finding which label i am and what i have coming to me .My mum god bless her had twitchy feet and bad balance but was told it was bad circirlation and the hair in her inner ear had dropped out , i see so many of the same things happening to me , i don't know if she just never told me . I have the same problem if it is genetic do i tell my sensitive daughter that this is what you have coming to you but you just have to get on with it and make the best of it . So many new things happening and i don't know if that is down to ataxia or my immue system weakening as my friend says .I have tried looking on the inter net but not getting very far ! It would be nice if someone said ataxix can effect the pains in your body ie: mild to strong pains but constantly . Losing grip of things more often could mean progression of ataxia And that my walking could get to the point of getting harder to do . I suppose only nature has the answers but i would like help x

[wobblybee]

Hi Maber

My SCA was diagnosed after an MRI showed cerebellar atrophy, that means

shrinkage.

I had blood tests to try to find out if the type was genetic, that was in 2011

and at the time nothing showed up.

It isn't always possible to find out which particular type it is.

Most of us have the same type of symptoms, to a greater or lessor degree.

You can ask to be referred to an Ataxia Centre, and be seen by a Neurologist

who specializes in Ataxia. xBeryl

[maber in reply to wobblybee]

Hi Wobblybee : ) i had an MRI can remember them saying i don't have parkinsons just bad spelling lol . When i explained about my mum they sent for her records even though she past 4 yrs ago . I'm not sure what it said they didn't shed any light . I could ask my doctor , i don't know if they would be interested in my case , not sure my husband would let me go but i will make appointment and try . Thanks xBERYL

[HarryB Administrator]

Hi maber

Thank you for your question.

My advice would be to ask your GP or neurologist for a referral to one of the ataxia specialist centres in either Sheffield, London or Newcastle. You will see a consultant neurologist who specialises in ataxia. As Beryl says, it may be the case that a cause for your ataxia is not discovered (between 30-50% of Friends of Ataxia UK do not know the cause of their ataxia) but those doctors are in the best place to find a more specific diagnosis if there is one to be found. There are over 60 types of ataxia known about just now and more are being discovered regularly.

Your ataxia might be genetic in origin but then again, it might not be. The best person to discuss this with is your neurologist.

I would also advise that if and when you experience a new symptom and are not sure whether it is due to having a SCA, write it down there and then so you will remember to ask your GP/neurologist next time you see them.

Best Wishes

Harriet

[scruffycat]

Good question. I'll read the answers carefully.

[silkwood]

I have no SCA label but I know I have CA.