Newly diagnosed- not coping

Hi I was diagnosed last week after episodes of

Blackouts, dizzy spells, falls and loss of movement in my right leg.

I am now multiple times a day falling, unable to swollow or speak fluently, loss of vision and still cannot use my leg. The hospital said to go back when needed, but when is this, with symptoms so crazy xx thank you in advance for your help

6 Replies

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  • Hi, I'm sorry to hear you've joined the FND club. I found it easiest to look at this as two problems; 1. There is an organic cause to the changes in the brain that have resulted in the changes in ability. Unfortunately it's a secret what that is although recent research suggests it can be viral or bacterial or due to physical trauma, so there is no one cause for everyone. It's only recently that the technology has become good enough to measure small changes in brain activity and before that the majority of research has been by psychiatrists who haven't looked for an organic cause.

    2. That actual symptoms which vary between patients. My brain stopped talking to the muscles around my rib cage, spine and core muscles although these improved after five days. However my brain stopped talking to the muscles down the inside of my thigh so I was unable to walk. I found electrocuting those muscles with a tens machine allowed me to relearn how to walk. It is now two months since the crisis and I can walk and climb stairs although I do get very tired. Best of luck and have realistic expectations. If you'd had a stroke you wouldn't suddenly expect to be back to normal, think of it like that.

  • Thank you for your help. I am just so confused with random things happening and I can't see the neurologist for 10 weeks

  • Hi Mandy

    Sorry I read your story.my heart goes out to u.

    I have the same systoms. I can't control falling losing balance vision problem right arm and leg weakness.

    I have permanent walking stick. I get blackouts that's my biggest concern.

    Do u get them when u relapse the blackouts.

    FND is hard to cope with .I am newly diagnose can't get my head around it.

  • I really feel for you, I was only diagnosed 3 weeks ago so still confusing and scary. I am scared to walk around when home alone incase I fall and blackout. But I will get there, huge learning curve for both of us xx

  • It's scary.we will keep postive.have u any clutch or stick to support your balance.

  • I have a walker, so that helps a bit.

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