After two years of being in the dark about his condition, Phil eventually found out he had ataxia. Here’s his story.
Hi, my name is Phil, I’m 57 and have been diagnosed with SCA7.
I’ve enjoyed a healthy life until about four years ago when I started to notice problems rising from a sitting position and walking.
I was referred to a neurologist who is now retired. He was very thorough and I was sent for many tests and scans. I had x-rays, blood tests and spinal taps but was not diagnosed, although Multiple System Atrophy (MSA) was suspected. This was obviously very frightening and worrying for me.
The fact that I’m not confined to my bed or use a wheelchair four years later discounts MSA. However, I was referred to Professor Hadjivassiliou (and his excellent team) at Sheffield Ataxia Clinic who were able to quickly diagnose SCA7.
For me, the worst part was not being diagnosed for over two years. It was clear that something wasn’t right, but not knowing what, for this length of time was very stressful.
Any ataxia diagnosis is hard to deal with, but at least you know what to expect and how to live with it.
When you don’t know, you have no idea.
I feel confident that my now retired neurologist was very professional, experienced and thorough, but despite this, was unable to provide a diagnosis. I wonder how many others are in the care of expert neurologists, but are without a definitive diagnosis, which is so important to planning and managing the rest of their lives.