Ataxia

Hi my name is Susan I have ataxia I had a bad fall in 2010 months after I knew something wasn't right I couldn't walk straight I would walk into things most bad I was very dizzy all the time I saw a consultant he sent me to a cardiologist he found I have heart problems then finally saw a neurologist had a MRI did test after test can't pin point what sort ataxia I have said my MRI shows some of my brain missing have dropped of! Thinks I got inherited ataxia my uncle had ms but could have been like this been told just got live with it I had finish work last year worked in a doctors surgery for over 20 years how do people get on with this I was so shocked çouldnt handle it at first but GPS don't know much about it thanks so least I'm not on my own with this Susan wilding

6 Replies

oldestnewest
  • Hi Susan

    You are absolutely not on your own with this. Are you a Friend of Ataxia UK which is free to join and offers a wealth of information? As well as this forum, Ataxia UK have a number of Support Groups and Branches around the UK where you can go to meet people with and affected by ataxia. The charity also produces a quarterly magazine for Friends and organises conferences which serve to disseminate information, both about what's going on in Ataxia UK and the ataxia world generally, for example a research update. Please take some time to look at Ataxia UK's website ataxia.org.uk.

    Please remember, you are absolutely not on your own.

    Best wishes

    Harriet

  • Thank you Harriet it gets frustrating at times yes I joined ataxia UK going check about the ataxia magazine should help thanks again. Susan wilding

  • Hi Susan, welcome😊

    On diagnosis I too was just told ' you'll have to learn to live with it'.

    The years actually leading up to diagnosis were oddly enough the worst to contend with. After being given the brush off repeatedly by GPs, I had thought I was slowly

    losing the plot.

    But, finding out that there was an actual cause for the weird symptoms gave me something to focus on. Once I was able to understand this condition, Cerebellar Ataxia, it was a positive step to moving forward.

    Research, and if you can, join an Ataxia Support group😊 Being able to talk to someone else coping with Ataxia is a revelation, just having another person agree with you regarding symptoms, knowing they totally understand, can be a great comfort.

    No matter what type of Ataxia, or how it was acquired, we all cope with similar challenging symptoms, just to a greater or lessor degree. You're among friends here.

    Inevitably we have to adjust our lives around the limitations of individual symptoms.

    There's a period where we have to come to terms with a deep sense of loss, grieve and because we have to, move forward😊

    You may also be interested in Living with Ataxia, another peer led support site. It's part of Bens Friends, which gives support to numerous rare diseases😊

    Best wishes 😊xBeryl

  • Hi wobbly bee thank you wish I know about health unlocked earlier when I first got told what it was I couldn't handle it thought going end up like a cabbage but as time gone on I do what I can. I'm going look into the advice you given me it really helped kind regards. Susan wilding

  • when I contacted ataxia UK they sent information to my GP as the docs in my surgery do not know anything about the condition- they also do these little cards that say I'm not drunk I have ataxia- I find they are very useful as it takes so long to explain what is wrong with me and the card gets the message across in a humorous way . look after yourself !!

  • Hi sorry took so long reply I have good and bad days I been having few bad days thank you it affecting my vision hope you doing alright I'm so used being fit and healthy hard adjusting thank you Susan

You may also like...