Please please help. Anyone have any positive stories with Functional Neurological Disorder

[colouringinpro]

My dear ds has just been diagnosed. He's paralysed below the waist. Researching today I am despairing about his future and degree (if) of recovery.

Can anyone help me please

Hi colouring. First up, sorry to hear about your ds. Tough times ahead for you all, and a huge change of expectations and life landscape.

I have a good friend who has FND and has launched a charity for those with FND and their families.

I'll message you with a link and also ask, if, you would like, whether she is ok for me to pass on her contact info to you.

Ok

www.neurosymptoms.org

This is a great site about FND written by a neurologist. Very thorough, with lots of information on recovery and feedback stories.
Has your son been referred to psychological services?

Hi one of my conditions is FND. fndhope.org/ is a very useful website and if you would like I will pm you the main UK support groups from FB - they are closed groups

Positive story about FND - www.dailymail.co.uk/health/article-5110665/Sports-mad-teen.html

Apologies its the DM

www.fndaction.org.uk/fnd-in-the-news/

Good website as well

As he is probably struggling, I will point out this one Simon to give him hope -

www.eveningnews24.co.uk/news/health/watch-the-emotional-moment-a-paralysed-father-of-three-from-blofield-takes-first-steps-outside-for-four-and-a-half-years-and-now-he-wants-to-walk-the-london-marathon-1-5218752

He was also a judge on All Together Now - the singing show back in January.

Has completed with a hand cycle the journey from London to Paris for charity.

www.telegraph.co.uk/news/2018/04/24/first-paralysed-man-complete-london-marathon-foot-crosses-finish/

Encourage him to join the groups, there is also a carers group for you.

Sadly you are far from alone.

Your son's story is far from over

@colouringinpro
Is he in a rehab unit at the moment?

Thank you so much everyone.

We are being discharged from hospital tomorrow to the community physio team.

I've found the FNDhope website and Facebook groups.

Still looking for recommendations on treatment centres etc.

He was the fastest runner in his class and Loves cars.

Thank you so much smurfy for that Daily Mail story (another thing I never expected to say)

Do you think he def has FND? I believe it’s a real condition but it scares me of how many people don’t have functional/conversion disorders and are diagnosed with them just as tests haven’t shown answers. I see FMD as a way of telling a patient they have physical symptoms caused by their mental health but carefully phrase it so patients don’t get offended and so they are more likely to comply with therapy

daisy that's a really good question.

He has the paralysis part, but no seizures.

Neuro registrar I saw today made me think actually maybe not. She said, in the nicest way, that she wasn't expecting to see us again.

Please God...

You don't necessarily have to have seizures for it to be FND- it takes many forms.
It's a common condition, but not quickly diagnosed. Please talk to your neurologist if you have any doubts about diagnosis.
Understanding and accepance of diagnosis is a large part of recovery.

I don't have seizures as part of my FND at all

it's not an essential part, the NEAD but a condition which frequently runs alongside FND.

There has a useful inpatient programme in London where there is a specialist Neurophysio so worth asking about that, however, it is based in the Maudsley hospital.

A friend of mine has been living with FND for a few years and has made incredible progress, going from seizures and being unable to move, to going back to work as a teacher after moving country.
She writes a beautiful blog, which I've linked below, to help raise awareness and provide support for others going through the same illness. Wishing your son all the best for the future

fndandmecom.wordpress.com/2015/10/

What age is your son? I'm hoping that you have had occupational therapy input as well, if not, you can usually self refer through social services, they usually host the community teams.

Thanks tatyr he's 10. Yes did discuss house layout with OT to make sure he could manage when we got home.

we love I'll have a read thanks so much.

Looking back, none of the Neuro team actually said FND itself I don't think. Bit there were mentions of functional disorder, movement disorder. I'm seeing my amazing GP tomorrow and will be interesting to see how they've described this.

I'm really torn. The Neuro psychologist I've seen a couple of times said that this situation is not massively unusual in children who've experienced a huge amount of stress and trauma, which ds has. She said, I think, 90% go on to make a full recovery. The Neuro paed registrar said she didn't expect to see us again. Maybe they're both right and in 6 week or so things will be very different. But I'm not convinced. And that may be due to bad experiences trying to get support for ex with his mental health, and also cos the last 6 year's have been so shit, I have almost lost my optimism.

I work in adult mental health liaison so not an expert with children. The treatment for adults focuses on the physical and mental health management. Physio to maintain muscle strength but he will definitely need some psychology input. FND is usually a response to trauma and that must be addressed. I have seen adults recover fully.

Thanks dotty he has been urgently been referred (back) to CAMHS and if that's not sufficient I'll simply have to find him a good private counsellor. The last 6 years have almost destroyed me, my ds is thoughtful and caring and it's clearly been far, far too much for him.

He's gone totally backwards, has lost 90% of the movement he had gained. Now can only wiggle his toes a little. This is a total nightmare 😭😭😭

I'm so sorry that your DS has this condition, colouringpro I also have FND, it's such and complex and, as yet, little understood condition. There are some very good webinars by experts in this field on FND Hope, that you might find useful and, I've linked to an Australian programme which is very interesting on the movement aspect that some people experience (in particular, there is a woman on it that woke up unable to walk and it shows some of her journey from paralysis to recovery):

My understanding is that functional disorders are due to psychological distress/trauma. It’s the minds way of expressing severe distress through physical symptoms, as the emotions are just too painful to work through.

What psychological help is he having? This will be key to his recovery. What’s happened to him in his life? How’s your health/mental health?

Thank you prof and so sorry to hear you have this awful thing too. Thanks for the link. In some of my research I came across something about a particular physio approach which involved distraction, have you heard of anything like this? Ds does have some movement when he's asleep or totally distracted.

lethal yes that's our understanding in most cases too. Ds has experienced a huge amount of stress over the last few years. 3 close family bereavements in last 2 yrs, latest an uncle he loved who died by suicide. His dad has bipolar and has been sectioned for months at a time in 2014 and 2016. His dad and I separated in 2016 which he has found devastating. Today I'm wondering If I should ask him to move back in as the stress of having him here is less than the stress of having a paralysed son.

The key here is that he isn’t paralysed. He’s not able to move his legs at the moment as this is the form his distress is taking. The fact that he can move his legs when asleep or distracted is very relevant.

I suppose what I’m saying is take he attention away from his legs, and try to eat him to open up about where he is emotionally. He’s not going to get better until he gets to a better psychological place.

There are many different theories about why functional neurological disorders present the way they do. One way of thinking about it is that by focusing on his legs, he is able to express distress without having to deal with the things that have caused him such deep distress and suffering. So by not being able to walk, his mind is saying ‘I’m really not ok here, I can’t function’ without having to address feelings around his uncles suicide etc.

Is he able to talk about everything that’s happened? What psychological input is he having?

How old is he?

Are there any ‘gains’ from his not being able to walk, e.g a Dad who he doesn’t see very much always comes to his appointments and takes him out afterwards?

No, I can't find any gains for a boy who loves running and trampolining. His dad is as involved as usual.

I do think he is in deep emotional and mental pain. A little slipped out this evening after a chat when he sobbed very loudly like he was crying out in pain.

The latest classification of FND places the neuro physio aspect on a par with the psychological, but I think for my ds this is driven by deep psychological pain and sadness.

He talked this evening about having fun at his friends and also feeling very sad. But he didn't seem to have a clue why the sadness, so I explained....

He fell asleep holding my hand at 11pm.

You seem to know a lot about this. Do you mind me asking how?