Hi newbie here

[GlennB]

Hi new here 62 year old male . Been diagnosed with gluten ataxia after getting encephalitis in 2019. Am trying to get my meds sorted out at the moment, to help with my severe leg and arm pains.Does the pain in limbs ever go away ? Are the severe pains even a symptom of ataxia ? Not really getting a lot of info from Dr's just told I have ataxia Thanks

Glenn

[wobblybee]

Hi Glenn, welcome🙂Generally speaking, Neurologists will say there’s no pain linked to ataxia..but lots of patients disagree, no matter which specific type is diagnosed. When my muscles stiffen I have pain.. Stiffness leads to unsteadiness, which can lead to falls. I hope your medication is sorted asap..

It’s not unusual for GPs to be unfamiliar with Ataxia, or Cerebellar Ataxia as it should be known. There are over 7000 Rare Diseases and Ataxia is one of them..

There’s helpful info about the Ataxias on ataxia.org.uk

And, you can download a copy of Medical Guidelines to pass on to your GP... but if you are unable to do this, contact the ataxiauk helpline..

Knowing what to do next after a diagnosis, or wondering how to support a loved one can be a bit intimidating; Ataxia UK are here to offer support, information and advice to anyone affected by ataxia. Why not get in touch? Sheila Benneyworth, our Support Officer, and Julie Greenfield, Head of Research are available to talk or email via our helpline.

If you would like to email our helpline, you can do so using this address: [e-mail] or you can call Ataxia UK's helpline on 0800 995 6037. Opening hours are 10.30-2.30, Monday to Thursday. The helpline is closed on Fridays.

What if I can't get through to the helpline?

We only have one helpline operator on at a time so if the line is engaged please do leave us a message and we will call you back. In the meantime, you may find the answer to your questioning the resources available on our help and advice page.