My Dystonia journey started age 14 with clawing and a pain in my right little finger/wrist. At first my GP sent me to orthopaedics which said there was nothing boney wrong, but it could be worth doing hand physio. 

I spent weeks working with this physio to find pens and working on hand strengthening with little impact. 

As I approached GCSEs at 15, my hand was getting worse, the clawing was spreading and the pain was spreading up my arm. This time my GP send me to a neurologist who examined me and sent me to a neurophysiologist to check the signals to my nerves. This came back normal and as such he discharged me saying it’s nothing nasty like MS so carry on. 

At 17, my symptoms spread to both hands, I was unable to move my right hand without extreme pain and ended up using a full hand resting splint to cope day to day. It was greatly affecting me and as such we went back to neurology who this time send me on to a Dystonia specialist. At this point you would hope that it means answers and a diagnosis. However, this wasn’t the case. I was told it doesn’t look like Dystonia which is lucky, as you don’t want that condition and to carry on and use pain killers like paracetamol. This was disheartening and left me stuck without any kind of answers. 

Aged 21 I had surgery on my left leg, this was to release the calf muscle which was so tight I couldn’t bend my foot to 90 degrees and to remove a metal plate from my foot. I had to spend over 6 weeks in a cast to stop my calf tightening. In that time, I lost a lot of muscle tone and developed a ‘dystonic muscle’ in my left foot. When the cast was removed, a very basic splint was put on, but within a week my foot was twisted and locked in a fixed contraction and severely affected my gait leaving me struggling on crutches. My GP was left with trying to manage my pain and symptoms with little guidance until I was seen by neurology. I was in agony, unable to sleep, strong spasms regularly through my body and often left in tears. I was struggling to walk safely but my GP thought I was ‘too young’ for a wheelchair and refused to refer me to wheelchair services. I had to wait until I was forced to move back into my parents house and changed GPs to start the journey of getting a wheelchair. At 22 I had to move home and have my mum as my carer as I was unable to live independent safely anymore. 

Due to this happening in the pandemic it took a while to find a neurologist who ran MRIs of my neck and head to ensure it wasn’t the start of MS and gave me a generalised Dystonia diagnosis aged 22. 

He arranged me to see the Botox clinic who started 3 monthly Botox in my leg, but they refused to give any Botox to my right arm. I then saw another neurologist for further treatment who changed my diagnosis to functional Dystonia (which I don’t completely agree due to the fact my condition responds medication and botox) and arranged neurophysio. 

I became a full-time wheelchair user in September 2021 and use a turbomed splint with pronation strap to keep my foot in as neutral alignment as possible. I also use a night splint on my right hand at night to reduce my pain. These tools combined with 5 other medications keep my condition controlled enough that I can cope with them day to day. I then have to have a rescue medication for bad days when I get locked in spasm. 

After 1 year I finally started neurophysio and we are making some progress but are aiming to stand and maybe just maybe manage a step or two if I am lucky. This might have been different if I had more immediate access to physio, but the year long delay meant my tone and contraction strength was strong and initially we didn’t think we would get any improvement. 

At the moment I am lucky if I receive my Botox every 4 months, my most recent appointment was 16weeks apart and my next one isn’t for 21 weeks when it should be 12 due to how overbooked the clinics are. This has a massive impact on my physio, my movement and generally coping with my symptoms as my Dystonia hits the end of the three month period and I am back stuck with a fixed contraction and no relief until the next round of Botox comes around. 

I had a period in hospital for another condition where I was left locked in fully body spasms for over 3 hours whilst the team didn’t have a clue what to do. They tried two doses of diazepam before giving me lorazepam which finally relaxes my body enough to break through the spasm. The lack of knowledge and understanding of what dystonia is and how they can treat it/support you whilst in a medical setting is really problematic and leads to unnecessary suffering for dystonia patients.