Told I have FND: Hello. After 2 days of... - Functional Neurol...

Functional Neurological Disorder - FND Hope

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Told I have FND

Vickyt123 profile image
5 Replies

Hello. After 2 days of mri’s due to loss of leg function (right side) I have been told I have FND. I also suffer from eye droop and severe eye twitch from any flashing lights.

The way the doctor put it made me feel as though I am faking and it’s all in my mind. My symptoms are very real. I am not stressed as he put it. He said counciling would make me all better.

I now feel rotten as he says it’s all in my head

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Vickyt123 profile image
Vickyt123
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5 Replies
cathys20 profile image
cathys20

It is all in your head Vicki, but not the way you meant it or the Dr. meant it. Its a disconnect between our heads and our bodies. It is very real, it is not feigned. Not sure where you are located. I live in the states. FND OR FMD is a functional movement disorder. Functional simply means they do not know whats causing it. Nor do we, but we know it is very real. I remember very early on in this journey thinking if its not on a test showing up that I must have lost my mind. But soon learned I could not make it better no matter what I did or did not do. As far as therapy or counceling, I don;t believe it will do a thing but it might just help to talk to someone. It has been 20 years since this all began for me. I am not classified as fnd, only because I had good Dr.s who took the time to really get to know me and that I have neurological issues that many they recognize and several they do not. I have since been diagnosed with Sjogrens disease, dystonia, and perepheral nervous system disorder caused by the Sjogrens they say. But as I always say on here, I have what everyone else on this board has in one way shape of another. I am very excited as I just qualified for a Sjogrens study and am hoping this might shine some light into years of neurological issues. STay strong, don't define yourself by a diagnosis, live life to best you and your body can, and always remember, you are never alone, ever. God :Bless, Cathy

Borrow profile image
Borrow

Hi Vicky,

Welcome to our FND family.

Firstly your symptoms are not in your head!

They are however in and from your brain, a very different story.

You are not making them up and you have no control of the symptoms!

Our brains are sending and receiving faulty information, a bit like a computer with a virus

You however can help your brain cope by reading, talking and listening to everything about FND.

It may well take you some time to take it all in and accept!

It has taken me nearly a year to fully accept my diagnosis of FND and to accept that FND is a very real neurological condition and that it is not my/our fault we have it.

We can however try and learn to live with it, after all what choice do we have.

Read as much as you can, talk to your doctors.

Talk to your family and friends about FND- some may not believe it but remember we all know it is very real!

Good Luck!

Fia1 profile image
Fia1

Hi Vicki. Keep your head up girl 😄, I know it's tough when they say it's all in your head as Cathy sais funny enough in a way it is but not as it sounds. Our brains don't talk to our bodies ie it's a short circuit fault in the computer 😂

Brain overload rewiring. Stress is normally no good and there are alsorts of things to learn about doctors are pretty useless so a good network of family and friends is always helpful tofight your corner in the hospital ring fndhope.org.uk is a good start and there are loads of Facebook groups for people with fnd keep fighting it's real Fia xx

DNE92 profile image
DNE92ModeratorFND Hope UK

Hi. You are not faking anything nor going crazy. Look at the info on the FNDHOPE.org site and also neurosymptoms.org written by a renowned Neurologist from the UK. You will have to keep fighting ignorance I’m afraid but your FND family are all behind you. Cheers Lou

Vickyt123 profile image
Vickyt123

Thank you all for your comments. I was so cross with the doctor . I know I’m not faking any of my symptoms. It was not nice to be told to put some headphones in, listen to music and I will be 100% cured. He looked at me as though I was an idiot. I did not want to be in hospital. I was forced by my gp and husband to go as they were worried. Anyway thank you I feel much better x

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