Forum

FND

Hi I was diagnosed in May 2018 with functional neurological paraplegia. The problem I am finding is there is not much support for t eat enough of this condition. I have worked all my life and as off May last near I had deteriorated with mobility and found it impossible to work. I have lost my independence and most days I am stuck in the house Does anyone know of research treatment or advice out there as I feel I have been left on a scrap heap.

Hi i have never heard of functional neurological paraplegia. Your heading is for FND? FND is real and one of my daughters friends has it. She was sent to a centre down south near bristol or bath i cant remember exactly i know they dealt with fibromyalgia and M.E. too and it involved hydrosphere and physiotherapy and other things, she was there a few weeks. She was lucky her care provider treated her with respect. Although she isnt fully cured she is a lot beter and has learnt her own coping skills. She was also diagnosed with PTSD as well which came from incidents from her childhood she had been supressing she is still in counselling for that. When she first got diagnosed we found this web site for her, and they were instrumental in helping her. https://www.fndaction.org.uk/treatment/ She met a few people who were also diagnosed with this. Its real and it must be hard to cope with. Have you applied for PIP? Also ask your doctor to refer you to occupational therapist and physio. I know hydrotherapy was good for my daughters friend, and she did have a try in the chamber. Oh also there have been cases of FND been re evaluated. I belong to a few facebook groups and have read of one or two who went on to be diagnosed with Lymes and yes MS but PPMS.

Then there’s this site: What Is FND - FND Hope International