Hi there, I'm new to this group, and ... - Functional Neurol...

Functional Neurological Disorder - FND Hope

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Hi there, I'm new to this group, and new to the news I received yesterday from my doctor saying I have functional symptoms. Now what?

Halfers profile image
10 Replies

Feel alone, don't know what to ask or who, don't know anyone with this,

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Halfers
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10 Replies
EnglishIslander profile image
EnglishIslanderFND HopeVolunteer

There is plenty of help available to understand and learn about FND. The main thing at the moment is to know YOU ARE NOT ALONE!! The is a strong Facebook group helping and supporting us all. Have a look at FNDHope.org and it'll explain a lot to you. If you need more info please just ask.

Halfers profile image
Halfers in reply to EnglishIslander

Thanks for replying :) I have read some stuff online, and so has my daughter. But I can't help but feel functional symptoms is just telling me what I'm experiencing rather than why? I feel I need to know why! I have been treated as depressed for 20 years but always doubted that was the case. My doctor wants to do full bloods, and me to go back after those in 2 weeks. He isn't sure if he can get a specialist but will manage my symptoms.. Is this treatment normal?

EnglishIslander profile image
EnglishIslanderFND HopeVolunteer

Unfortunately it is most peoples' experience. So little is known about the mechanisms of how it works and affects us. Even the term FND is an "umbrella" name given to a wide range of symptoms, as yet unexplained, but presently being researched. At present far too many medical professionals are well behind modern knowledge of the condition and do not know what to do for us, so often do nothing but stall! I'd suggest you join the Facebook group via FNDHope.org and you'll come to understand so much more about it. Also unfortunately NO-ONE can tell you exactly "why". There are many theories and beliefs, but all end up at the same place.........US suffering an insidious condition! There are a few places around the UK which specialize in this and a few good Neurologists. I'd certainly suggest asking for a vitamin B12 test to be included in your blood tests too as this is an ongoing concern with many of us. You can write to me at duncan_peacock@hotmail.co.uk. Best wishes.

Halfers profile image
Halfers in reply to EnglishIslander

I'm totally baffled by the whole thing! Partly feel relieved that I'm believed, but that relief is confusing as its like I have hit an even bigger brick wall! I haven't yet joined the FND hope FB page but will do so, can the page be accessed via my own personal FB? I will add you on my hotmail and thank you so much for taking time to read my questions and answer them, no longer alone ;)

EnglishIslander profile image
EnglishIslanderFND HopeVolunteer

To join, go to Polls - Are you a member of FNDHope Facebook Page, click "No but I'd like To join". That should take you to a link where you can join.

Louisajc profile image
Louisajc in reply to EnglishIslander

Hi I tried typing polls into the Facebook search space and got a dating site?? Fnd hope doesn't come up any ideas love to join the page :-))

EnglishIslander profile image
EnglishIslanderFND HopeVolunteer in reply to Louisajc

Louisajc, go to the Website fndhope.org and on the left hand side of the main page you will see a link to request the Facebook group. My name is Duncan, see you there. :-)

EnglishIslander profile image
EnglishIslanderFND HopeVolunteer

It certainly is a very confusing and uncertain time when diagnosed. Mainly because the diagnosis is really saying nothing other than labelling your symptoms. However there ARE treatments and options to reduce, if not totally relieve them. Also some find it turns out to be incorrect diagnosis and a different reason is found. Really is down to seeing a specialist in FND as each and every one of us is a uniquely individual case. Be pleased to see you either on group or if you would prefer, just message me. We are all here to help 'and support each other.

EnglishIslander profile image
EnglishIslanderFND HopeVolunteer

Oh, the Facebook Group is a closed one but you will be added by an

Administrator and can then chat without it appearing on your personal Wall.

Louisajc profile image
Louisajc

Hi there

6 1/2 yrs and counting it is a very frustrating business and for me I have got worse every yr and presently depend on wheelchair etc to help when outside the.house. Love to get back to living!!! One understanding hubby and 2 kids. Each day a struggle. Your not alone my dear one of these days someone will hopefully figure it out! Until then enjoy what you can :-)).

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