Help: Hello my name is derrian . After 11 yrs of... - FND Action

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Derrian
Derrian

Hello my name is derrian . After 11 yrs of being admitted for strokes and TIAS .I was abruptly told it was in my mind . This blew my mind, distroyed me I had a massive break down. After 2 yrs and second opinions was it explained to me I had FND . Which helped me to accept I wasn't making these things happen to me. IT doesn't stop the numb droopy face coming and going . The horrendous toilet issues I have daily . (Bowel and bladder) and the disassociation that accrues on a day to day basic in differing degrees. I find it hard to go out side my comfort zone which is getting smaller. I struggle to be out side to go in super markets or busy places . I am dependent on friends and family. This is not a life I am just existing. Derrian x

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I'm sorry that you have been treated so badly, FND is horrible, I've been struggling with it for ten years too and been told more or less the same thing or told to look on the neurosymtoms.org website that describes it not all in the mind but like a computer softwear problem in the brain so parts of the body doesn't function properly. It's just a pity there is no cure for left sided weakness, facial aphasia, speech problems, gait problems and a lot of the other problems that come with FND. I think neurologists just wash their hands of us after the diagnosis even after like you I spent two weekly occasions being paralysed in hospital last year, yet no follow up was required, and was barely walking, falling over on discharge as they needed the beds. I hope you get some support or keep trying to take each day as it comes and take regular rest breaks. Good luck.

I have e dry sympathy with you being a very concerned Mum of a daughter recently diagnosed with FND. After 8 years, a private consultation back in January, now in July and still no help in any direction, and another appointment in four months with still no help in between. You are not alone, but it’s a question of where and whom to ask for help of some kind.

Anybody got any suggestions? Seems the doctors pass the buck because they just don’t know! However ,with a debilitating condition, there has to be help available somewhere. My daughters three children do t know what’s hit them, let alone her husband.

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