New Girl. Anybody else out there with good, bad or in between tales of FND??

enaj19

Hi all 
I was diagnosed with FND 2 years ago and it was only 2 weeks ago that I met a professional who not only knew about the condition but also knew where to get help but how to get help.
She also really has my back as proven by the kick-ass letter she wrote to my GP and my Neurologist. What a blast of fresh air she is.
Anybody else out there with good, bad or in between tales of FND??

Tori_Scope

I'm really glad to hear that you've found a professional you're so happy with @enaj19! That can make all the difference Do you feel as though things are on a more positive track now?

I don't have any personal experience of FND, but I hope another member who does will be able to find your post and share their own experiences soon. 

enaj19

@Tori_Scope I don’t to be negative; we all have our stuff to deal with but unfortunately not, it’s one tiny step forward and three giant leaps back! I was diagnosed 2.5 years ago i had to give up work over a year ago now and I’m in a worse state than ever.
One health professional prescribes/suggests/recommends something and the next disagrees and the rug’s pulled.
I wasn’t entitled to SSP, so i was awarded ESA. I’m still on ESA, my rent was never fully paid, so i’m in a lot of arrears and facing eviction from a property that is now completely unsuitable; it’s a very small bed sit, in a house full of students, with a shared kitchen which is two floors above me and impossible for me to get to if I’m particularly unwell, which is happening more and more. If that’s not enough my landlord is taking me to court in November to have me evicted.

I’m in the process of registering with the council for more suitable accommodation but I’ve already been told that there is a long waiting list and to consider private housing but no private landlord will agree when they hear about all of the above and if, by some small miracle they did i can’t afford a deposit, furniture or moving costs.

Any and all advice most welcome 🙏
 

bluefox

I’ve had some bad experiences since my NEAD/FND diagnosis. I was referred to www.neurosymptoms.org for help. I suffer with seizures and tics and other problems relating to FND. 

I had an amazingly supportive GP but sadly she left the surgery. 

It’s a really difficult diagnosis in my opinion and leaves you feeling rather isolated. 

enaj19

Hi @bluefox I was also referred to that site but I didn’t find it particularly helpful. My speech therapist put me on to https://fndhope.org/contact/ this is international, so select UK and there’s so much information about research, lived experience, treatment, inpatient and outpatient services. So much that I didn’t even know existed.

It does leave you isolated, you’re spot on there. 

I’ve also been made to feel like I was faking it or making it up almost. I’ve spent way too much time crying and swearing when I’m alone. ✌🏼❤️‍🩹

bluefox

It’s because our symptoms are classed as functional that we are treated as malingering or faking, whatever you wish to call it. 

I can honestly say I’d rather people or health professionals gaslight me, bully me or make me feel small for the sake of a diagnosis. 

But unfortunately we are where we are and we are warriors.