Diagnosis- Orofacial Dystonia/Functional Neurological Disorder
Main Symptoms- Dystonia, facial pain, severe facial spasms, speech problems, eating issues, memory issues, Migraines, chronic fatigue
Father’s Day. My family are the most important thing to me so when I got up on that June 19th 2022, I was incredibly excited to see my ‘old chap.’ I Couldn’t wait to spend the day with him and give him his pressies as always. Got up, went to the bathroom to do my teeth, looked in the mirror. I just remember thinking OMG, Bell’s Palsy or something. My face had drooped down and stuck on one side. I had no control over it. Couldn’t laugh or smile and couldn’t move/open my mouth as normal. I had a headache. I shouted for my partner who came running to see me and noticed it immediately and seemed a little worried, but I’m lucky that I have someone that is so fantastic at being the ‘calm one.’ Quickly, this progressed to going through the things that you should check for a stroke, but I could lift my arms no problem etc, yet I still had no control over the right side of my face/mouth.
Nothing would stop me being with my Dad on Father’s Day, so off I went. The second I walked through the door I said, ‘You OK Dad?’ and he replied ‘you’re not.’ That was literally the second he clapped eyes on me. I could see with my Mum’s face that seeing me had shocked her. They wanted me to go to the walk-in centre/Doctor’s ASAP and I promised I would.
I sought medical advice ASAP but I was sent straight from there to A+E. I was in Hospital for two weeks. I had every test under the sun. They thought I’d had a stroke for some time (incredibly worrying for my family) but then I was passed over to neurology.
The neurologist was a ‘nice man’ but he did some tests on me and asked me to do various things, some of which I could, others I couldn’t and he said if your EMG comes back OK, we are dealing with a functional neurological disorder.
‘What’s that? Will it go or improve?’
‘Some FNDs improve, some stay the same, some get worse.’
I asked him to write it down for my family as I wasn’t remembering things at all well. He then scribbled FND down and a website neurosymptoms.org and off he went. All of a sudden, I’d been diagnosed. Good in one respect but at the same time I had no idea what it was, I’d never heard of FND and I was incredibly confused about what was going to happen to me. I read the Website inside out and it was a useful resource but when this is all that you’re given after a diagnosis and then sent on your way, it’s an extremely frightening concept.
This was the start of my FND journey and what I have found since is the distinct lack of treatment pathways on the NHS even though my symptoms have got progressively worse . All support has been through our seeking of private treatments. I don’t know what I’d have done without the support of my family and partner and the love of my two fur babies.
I want to take this opportunity to thank two special ladies, Chloe and Imelda (Mindful by Nature). To Chloe, she knows why- not all heroes wear capes. To Imelda, thank you for helping me consider a different way of thinking and for your support of the FND Action Fundraiser – link below.
Thank you also to The Real Print Co for the t-shirts.