New diagnosis

[mgzrrover7]

Hi, my sister has just been potentially diagnosed with this. Can anyone tell me there ways of dealing with it, what medication they've had/are on and anything she can do to help her. She's really scared that this is going to ruin her life in that age thinks she won't be a le to do anything anymore, thinks she is going to be wheelchair bound. How have you also dealt with this mentally, as she is really struggling, she is currently in hospital at the moment and has been for the last few days. TIA, any help advice would be appreciated.

[Lucy-15]

Hi there

What a worrying time for you all.

Maybe you can explain what symptoms your sisters is experiencing?

As there are so many that fall under the FND umbrella .....then I’m sure one of us friendly lot on here can share their experience too

Also where you are located too often helps?

Stay strong your sister. Thinking of you all.

Lucy in Brighton.

[mgzrrover7 in reply to Lucy-15]

Hi thanks for replying. For about a year she has said that she feels alot of pressure on her head and neck and she can't apply any pressure on it, she sometimes feels her head and neck are burning and the top of her head feels numb and has a constant headache. She has suffered with depression for quite a long time. She has had lots of tests, blood tests etc done at the hospitals but all have come back clear. They say they think she may have nerve damage. She now thinks that she is going to be wheel chair bound and paralysed and thinks her life if not worth living. She's in a really dark place, she also didn't eat and drink for a few days, she has been taking all sorts of meds like tramadol and some pills for depression but she says nothing is helping. She lives in Cambridgeshire. TIA for any help or feedback and advice. Lisa

[Gypsi in reply to mgzrrover7]

Could it be migraine? Has she seen a neurologist?

[mgzrrover7 in reply to Gypsi]

Hey, a doctor at one point over the last year has said it could be migraine related, but because it didn't go away, she keeps getting in a reallu low state, this is the first neurologist she has seen and this is his first diagnosis

[Daesin]

I say this with no medical background and with very limited information on fnd. I'm only a week into this adventure. But I can tell you she's going through hell. She really needs her sister. Please just keep encouraging her & letting her know that she's loved. That's all my sister can do for me right now.

Best of luck to you all.

[mgzrrover7 in reply to Daesin]

Yea what's we keep doing so hopefully she will get there

[M3rry]

Unfortunately we don't get a management plan with this diagnosis, Hopefully your sister got the neurosymptoms.org website.

Plus - this will list all of the various symptoms that get linked to FND - NO ONE GETS ALL OF THEM!

Minus - there is no (currently) any understanding of cause

treatments - whatever controls your symptoms, sometimes it might be as simple as a new pillow

things that might help your sister - something else to care about. Even if it is only a goldfish or an instagram houseplant. Push her to try a new hobby, make sure she feels included in life.

All the best

[Penny-Lane]

Hi, I am not a doctor but have had FND for the past 10 months. At the beginning I had constant fits, memory and cognition problems, amnesia, couldn't walk, had dystopia and my speech was badly affected. Only after starting movement therapy (gym, physiotherapy, hydrotherapy) and seeing a neuropsychologist have my symptoms improved. I still occasionally fit but not 30 times a day. I have dystopia and some trouble walking but have progressed to just using a stick and can walk longer and longer distances due to walking a little more each time I go out. From what I read, early intervention with movement therapy and a psychotherapist who knows about FND are critical. Also a supportive partner and family member were critical. I was also never disbelieved in hospital or rehab - or told it was all in my head... Good luck to your sister!