Amy, North England

Hello! My name is Amy. This is my FND story.

I study tourism in Sweden. I developed FND in my third and final year after (we believe; we may never actually know why) a chest infection, suspected pneumonia and influenza. I kept studying despite feeling awful and hardly being able to move. Fatigue started in February 2016 and never really went away. My Mum came and saw I still wasn’t getting any better. She talked to my teachers and we both decided I should fly home as there was no-one to look after me. I returned home to England and saw a doctor and got antibiotics and steroids. I got a bit better (not fully, but over the infections at least), and returned to Sweden as I had things to do.

I returned home in the summer as I was still fatigued and needed help. A place in Finland on exchange studies was confirmed which I was so happy about and excited for!

I went to Finland with lots of help from my parents. I was still very fatigued but also excited and grateful for my selection to go there.

Three weeks into my studies there, I was in a lecture and FND started- paralysis, drooped face, slurred speech, (still) fatigue, numb legs and I had to ‘walk’ with a drag. The fatigue was still consuming my every effort as well as trying to pretend everything was ‘ok’.

By this point I could no longer attend health appointments or look after myself. My lovely room mate, who became a great friend, would do all she could for me-an angel! However, I felt so bad for her and couldn’t continue. My parents flew out and rescued me and we packed everything back up again and flew out of Helsinki ASAP to get sorted.

In England I saw a lovely GP who referred me to a great neurologist who diagnosed me with FND (after checking for MS etc in a brain scan- I was/am so grateful I didn’t have that or other nasties!). I now have a lovely neuro physio lady. My main goals are to start walking normally again, to smile as normally as possible again and to return to complete my studies in summer.

Things are being put into place to give me the best support possible and slowly I am learning to walk again and to have the most ‘Amy’ body as possible. I am so grateful to everyone who has/is helping me on this journey. I have made a Facebook support group for younger sufferers (or fighters who feel young; even if not every day!) of Functional Neurological Disorder in order to create a place to vent, share top tips and support each other as we go through this journey. My aims are to increase awareness about FND and set up conferences and meetings with sufferers and medical professionals worldwide, my focus being particularly the UK and the Nordics.

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