I met this morning with Professor Cader at The John Radcliffe in Oxford. After a detailed discussion and some tests he told me I have , wait for it... Idiopathic Late-Onset Cerebellar Ataxia.
It has taken nearly 10 years to get to this diagnosis... Now I know I have a much better idea of how manage my future.
All I have to do now is try and convince the Powers that be, that they should not have taken my DLA off me, and refused me P.I.P....
Dave
It took a number of years for Cerebellar Ataxia diagnosis for me too. Finally, angiogram and MRI, and analysis from neurologists and neurosurgeons finally confirmed that I was born that way. I will keep my fingers crossed that the powers that be will reinstate and/or fix you up with needed benefits.
Hi ddmagee 1
I have had about five MRI head scans over the years but, finding a consultant that knows about Ataxia has made all the difference
Dave
Great! May the odds be forever in your favor!
Congratulations!
Have you appealed to PIP and legally they have to give you a copy of everything they have on you (so may help) x
Hi Litty
Do you mean that the doctors must provide everything.... I have asked to be copied in on all replies. Unfortunately Doctor now on holiday for two weeks so wont get his letter until after my appeal has to be submitted. I will I hope be able to send it on.
Dave
Glad you finally got a diagnosis, albeit probably what you were expecting. What tests etc did you have done for the neuro to form that conclusion at Oxford. Good luck with PIP, it can be a minefield.
Hi Pollybanana
Many thanks for the reply.
Luckily the consultant had my notes from a previous Neurologist, he asked quite a few questions any symptoms I had, I walked up and down in my bare feet, he then checked my coordination and there some tests on my feet ?????
This professor had worked with the specialist Ataxia unit in The john Radcliffe and the Nuffield hospital. That is why I wanted to get a referral there. He knew what was going on with me, not like a previous Neurologist who gave up on me.
Dave
Thank you for your reply. My local neurologist has suggested referring me to the London centre. I think I may say yes.
Hi Polly.
Not all neurologist know the full extent of the many various forms of Ataxia.
If you have chance to see an Ataxia specialist go for it. They are for more understanding and if you still don't have a full diagnosis, they will help.
Good luck
Dave
ps there may be a wait. I rang appointments in Oxford and as if there were any cancellations.. Luckily they had a new Saturday clinic and I was in within a week..
Diagnosis query
Ataxia Diagnosis.
the dreaded diagnosis
Trouble getting a diagnosis, any advice please.
Is it possible to have a remission?
