Ataxia : Hi all,I had a classic the other day. In... - Ataxia UK

Ataxia UK

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Guido37 profile image
17 Replies

Hi all,I had a classic the other day. In a phone appointment with my GP practice I was asked by the doctor,who i have never met if i had been drinking.I had to explain and spell out the name ataxia to him.Do these people ever read our medical history. 😊

17 Replies
peakerhome profile image


One GP told me to Google Ataxia!

Guido37 profile image
Guido37 in reply to peakerhome


PatsyIpswich profile image

How very annoying to say the least .. x

Guido37 profile image
Guido37 in reply to PatsyIpswich


Pekingese2 profile image

Deer me Bet he can spell idiot lol 😂

Guido37 profile image
Guido37 in reply to Pekingese2


That's awful 😟

Jingle1967 profile image

This is similar to my experience. I saw my Neurologist in February. I’ve been diagnosed with CA, but they don’t know which type yet. I told him I think I have REM sleep Disorder, as I think I act out my dreams. He told me I should consider that I may have MSA. He said they have a very good website. Told me the web address and told me to have a look. Told me nothing about MSA or its symptoms or links to Ataxia. Not very helpful

Guido37 profile image
Guido37 in reply to Jingle1967


cocoa profile image

Not helpful in our situation.

I find that I am better with a face to face consultation, so the stress of dealing with hearing/communicating on the phone can bring on speech problems.

My next consultation with my neurologist is by phone. This was arranged before the pandemic but he did explain to me that is the way forward for hospital appointments.

My fear it is going to be same with GP's.

Legs-alive profile image
Legs-alive in reply to cocoa

It already is at our local health centre. You only actually get to see someone if it’s something that needs examining, ie a lump etc

Guido37 profile image
Guido37 in reply to cocoa

Hiya,I know it's a mine field. Saw my neurologist and he told me to come back in a year. Derr.

nigelrheath profile image

I am just exploring speech therapy via nhs and the use of apps, of which there’s many.


Guido37 profile image
Guido37 in reply to nigelrheath

Hi,I was due for speech therapy but it got suspended. Down to covid. 😊

penelope2 profile image

Hi all. A friend had cancer and she had this whole team behind her and a specialist nurse who answered any queries whenever needed. Not that cancer can be compared to ataxia, but I questioned my gp aboit this last year and she just glared at me!

Thankfully my friend is well now but if we only had more professional support and interest.

pinjem profile image

It is insulting and upsetting, I often start with the statement, 'You may not have had time to look at my notes, I have ataxia', then talk- GP's can be under such pressure now they just cannot take the time with a long list of personal emergencies to deal with ahead of them to be able to always read notes. That introduction, then talking about the reason for visiting straight away, without pause, stops any misunderstanding and allows the time to be used to your maximum benefit.

Susie1972 profile image

My doctor admitted he hadn't got much experience or knowledge with ataxia, I just walked out deflated, I had to tell HIM wat tablets to prescribe for my leg cramps........

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