My Tourettes Diagnosis


Hi, my name is Beth and I am neurodiverse. Today I am going to tell my tourettes diagnosis story. My tourettes journey began a lot earlier than I was aware of it. The first time I was aware of my tics, even though I did not know what they were back then, was when people would tell me off for rolling my eyes at them. I could not control it.This was when I was around six.

There had been signs even before that with constant coughing, jerky movements and very loud sneezes when I didn't need to sneeze. Then I had hiccups constantly that turned out to be tics. It was funny odd and concidental that it was hiccups that made me realise I had tourettes because one of my friends who had hiccups just like me had just been diagnosed with tourettes syndrome when my hiccups became more constant. But I thought my hiccups were different from my friends until they evolved into shrieks and screams. It was then I realised that I had tourette syndrome. I struggled with this as my friend already had it and I felt like a fraud because it may have looked like to others I was just copying.

The first step to being diagnosed was going to see my GP. We brought a recording of my vocal tics which we were promptly told to turn off. The referral to the neurologist was pretty much plain sailing - the doctor gave me some indegestion tablets in case they magically cured me but then referred me once they did not work. Once I got to the neurologist it was a different story.

I had test, after test, after test and was told many  things about tourettes syndrome I know not to be true. One that stood out was the neurologist told me my tics couldn't be tourettes as they were too complex and too many muscle groups were involved for it to be tourettes. After a year, 11 blood tests, a 24 hour urine test, an MRI and a test where they send electrical pulses through your nerves which I did not complete due to the pain it caused me I was finally diagnosed, no not by the neurologist who had been seeing me all along, but by a registrar who told me I had a tic disorder but wouldn't tell me which one. I later got a letter with my diagnosis of tourette syndrome. This was at 17 years old after persuing it for over a year and having both motor and vocal tics all my life.

I tell this story of my tourettes diagnosis as getting diagnosed with neurodiverse conditions can and often are long and gruelling. I had it easy compared to others. This diagnostic system needs to change and this change will only happen through people sharing experiences and struggles with the current diagnostic system. Now a little about this podcast - it aims to educate, inform and entertain people whilst helping neurodiverse people become more valued and accepted.

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