Finding peace with FND: I'm new here.Hi... - Functional Neurol...

Functional Neurological Disorder - FND Hope

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Finding peace with FND

Tid3
Tid3

I'm new here.Hi everyone.Recently been diagnosed,told I have FND.,doctor more or less walked out after telling me.I had my arms up in the air like what do I do .He walked away I shouted to him who do I see he shouted back, me in a months time and walked away.-15 yrs of leg paralysis,tightness around rib cage like a corset.Back pain as if a plank as been inserted eyes wont open, foot going black in the bath, cant hold my head up, cant hold a cup cant walk chocked 3 times.Throat wouldn't swallow, had to grab my tongue,suicidal,I get my MRIs told they are fine I have FND and he walks away. Yesterday

12 Replies
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Hello, Im not familiar with FND but Im so sorry do you have family that can help you out? Maybe finding another doctor who deals with FND might be in order.

Its very unprofessional that he just walked out and left you without any idea what to do about your new diagnosis. Hope someone here can come along and be better help than me.

Good luck hang in there !

Tid3
Tid3 in reply to Batty1

Thank you.No I have no family,my friends have been my family.I have got in touch with my doctor today and also phoned ,mental health matters.Hoping to get a referral.Thank you.

Hi I’m very sorry you are having to go through this .Also for the way the doctor walked out on you . It was very unprofessional of them .

My 11 year old son got ill in October last year , they found he had a spinal cord disease . He had lumbar puncture to relieve pressure on his spine . Since that day he’s been in a wheel chair . He has thoracic back pain going round in to left rib . Lumbar pain since the lumbar . Paralysed to above both knees . Floppy head . Cannot sit unaided due to hips and trunk not being able to hold him up any longer . Large pupils , low blood pressure , spacing out periods . ( if you would like to read the story click in my pick go to my page ).

They say it’s nothing to do with his spinal cord disease .

Last month he was diagnosed with FND .

He has intense physio 3 times per week at the hospital , he’s had 6 sessions up to now but no improvement as of yet . He has a psychologist and a dietician. He also has a pain team and an occupational therapist.

It’s a very hard and tricky thing to deal with.

You should be asking to be referred to a physio , not just a normal physio a neuro physio .

I hope you find and get the help you need .

Tid3
Tid3 in reply to Gemmamumtodane

Thank you,I have no words,I cant think right now,thank you for your kind reply.

How he treated you was wrong. And unfortunately that's how it happens for a lot of us. The doctors don't like to admit that they don't know. And fnd is a giant label for that's weird we don't know. Get to know your body listen to what you can and can't do pursue your strengths and accept that there will be days when you're not as strong as you want to be. Good luck to you dear. Blessings to all

Tid3
Tid3 in reply to Daesin

Thank you,I am learning about myself.Glad I know now what I am against.

You are going to have to become your own expert. You're going to have to become your strongest advocate. And I absolutely and very strongly suggest that you find a good mental health counselor because no matter what the diagnosis ends up. .. they are putting you through hell. Your body is fighting against you ...the medical community has failed you... and even your own mind is fighting against you at times. That stress enough will kick a healthy person off the cliff.

We all walk a different path. We all have different experiences. But we're all sadly in the same neighborhood.

Blessings to you my friend.

Thank you,I like you're mentality, that is me to I will fight.

Hi there if its any comfort to you , fnd is curable , I developed the condition after a very stressful period in my life and was left bewildered by doctors . There is simply not enough information out there .my doctor described it as the body sending the wrong signals out and the pain and symptoms you are feeling are real. It starts by a malfunction in the brain signals and your body over reacts with real physical symptoms.he explained once people get a diagnosis of fnd they can get better quickly by cognitive behaviour , diet , physio and the right emotional support. My symptoms were mainly head and eye and I suffered temporary blindness which was very scary . There is a website that my doctor gave me called neurosymptoms.org that one of his colleagues has put up for help and advice .I hope that helps you :).

Thank you.

Is it possible you might have a genetic condition called periodic paralysis? Won’t show up on an MRI.

some of your symptoms sound like dystonia...I have cant hold my head up...swallow problems...rib cage tightness...eyes not opening would be blepharospasm type dystonia...dystonia does not show up on a MRI scan but there are neuro tricks you can learn to give you some respite if thats what it is....dystonia is also quite rare and I wouldnt expect much better from the neurologists who deal with that either....am 20 years in and have learned so many tricks that have made life so much easier...do keep a journal daily writing in what your symptoms are and what you have been doing on that day...for me it gave me a good start at how to live with dystonia symptoms....unfortunately they have now decided that these symptoms are FND but then changed this from a diagnosis of 5 neurologists to an opinion of one neurologist when they realised how stupid it made them sound to try and say a dystonic event that was treated and medicated as such at some point stop being a dystonic event but became an FND event...the fight goes on as having FND does not enhance an already challenging life one bit...

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