I found out I had Ataxia when I was copied on a letter from my Neurologist to my GP. It wasn't even a personal letter to me.
There was no explanation of what Ataxia was, or where to get help or anything. The only other thing that letter contained was a comment about blood tests.
I was lucky that I found Ataxia UK almost immediately when I turned to the internet, and have found some support there. But I am starting to feel a bit angry that the diagnosis was simply dumped on me without any offer of support at all.
I was also lucky in that my Physiotherapist, who had got me in to see the Neurologist in the first place, had also referred me to a Neurological Rehabilitation Centre and they have brilliant in giving me some aids around the home, and some specialist physiotherapy to help with my balance. However, this was because of my back pains, and balance problems, and the timing with my Ataxia diagnosis was co-incidental.
Am I wrong to feel a little let down by the NHS? What have your experiences been?