I was diagnosed 9years ago with ME/CFS towards the severe end of the scale. Something just didn't sit right and everyone except the neurologists didn't want to know. So after developing worsening spasms in my neck, jaw, eyes, face and other parts of my body I was then diagnosed with a Functional neurological movement disorder. Still baffled and no real help I have plodded on with ridiculous amount of meds and Botox for the spasms.
Now 9 years ago and probably every time a new medical person saw me they had asked if I had been diagnosed with Dystonia? , To which I would reply I've been asking the same thing for years!!
I was so so sick that it was coming up to nearly a decade and I'm a far cry from being the healthy, lively, bouncy, daft and a dooer I decided to google the best movement disorder consultants in the U.K. within the NHS. It brought up the results of the University College London Neurology and Neurosurgery. So went to the GP and asked to be referred as my Consultant in Maxilofacial who treats me with Botox had said I had Dyskinesia!
8 weeks past and I received a letter for an appointment, usually I would prepare for everything. But because this was as I'd said to the Consultant "you guys are my last chance saloon" I prepared by just getting there!
He examined me, made me do some odd things that made my spasms worse and better for short periods.
He then said you are a perfect candidate for an inpatient programme and it isn't Dykensia it's Dystonia! OMG I was shocked, if I could have I'd have hugged him there and then, but an almost embarrassing lunge across his desk to shake his hand sufficed!
I know what everyone is thinking "what" this Consultant is worth his weight in gold!!
He told me that it can in most cases be helped or reversed with trying to retrain the BRAIN. I wanted to cry because he knew exactly what I'd been through to get to this point! He concluded that the messages within my nerves are not working as they should which cause several different parts of my body to spasm and hold stiff odd postures and sometimes with a little trickery and hard work this can be reversed!
HOLY S***T could I actually get my life back?!?!?!?
4 weeks have past and I just keep thinking of all the things I could possibly do again! 9 years is a long time.
Just remember FND is a miscommunication between your basal ganglia and through to nerves and their place in your body part that isn't functioning as it should! Trauma can be a contributing factor of functional disorders, however it is the BRAIN that is firing wrongly. If you were a car you'd take yourself to a mechanic. Find the right mechanic and your body will hopefully start to fire correctly.
Never give up!
Believe in yourself if you don't think something is right with your diagnosis. Find the right mechanic lol for your brain! But take all the help along the way too!
To the future! It's certainly starting to look a bit brighter now after the most taxing time in my life!
hope you find techniques/treatment which helps you back to health xxx
Friend with FND. Lost hope in life
What pain relief do people take? Find it hard to explain pain to GP any help?
Ambulatory EEG for Non Epileptic seizures? Anyone?
FND?
Cruel cruel diagnosis / NHS money saver.
