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

He has a CAMHS assessment in the second half of November. I'm thinking we might have to try and find money for a private child psychologist. Another 10 weeks of CAMHS counselling think is woefully insufficient for what he needs.

Has anyone talked to you about mitochondrial disorders? It's very likely that FND has a mitochondrial DNA myopathy at the root of the cause. And the inverse is certainly true...many mitochondrial disorder patients (like my ds) have functional neurological dysfunctions. My ds was diagnosed at 10 (most obvious symptoms at the time were severe intractable migraines and cyclical vomiting, but had many functional neurological issues over the years), and was put on a treatment of supplements (called the mito-cocktail) that helped his symptoms enormously. By the way, bipolar is common in mito disorder patients and migraines in the maternal line are also common. Here are two websites that have information about mitochondrial disorders: www.mitoaction.org/ and www.umdf.org/ .
My ds at almost 18 is only just starting to come to terms psychologically with the fact that he is different than his peers and just can't manage as much as they can. A good therapist (that actually believes that his disease is real) will be very helpful for your ds.

Sorry, I meant to say that they have a mitochondrial DNA mutation, not myopathy....The working theory on the dysfunctions happening to some people and not others under stress is that if there are mitochondrial DNA mutations that reduce the function of the mitochondria, that might not be noticed under normal conditions, but under stress it comes up because neurons need a lot of energy to function and the stress has put the functioning over the edge....that's my layman's description...I'm sure a geneticist could explain it much better.

Hi Sofia no, they haven't. Not sure I can get my head round that at the moment, my brain is not workjng well either.Bipolar connection is interesting. Have got him a load of b12, will look at mito cocktail too

Hmmm interesting reading. Fatigue has been an issue for many years

I am at a lecture today from Dr. Boles. I will ask him. It means that any supplements that could help the mitochondria, could help your ds. Also you should get this genetic testing done.

Thank you x

He blacked out during a very very loud fireworks display this evening. Was unconscious for 20 mins. Called 999 as couldn't rouse him. He blacked out from the stress of the noise . He seems so mentally fragile I'm terrified for him. Now seems to have amnesia re last two weeks ?!?! What do I do????

That sounds like POTS. More mitochondrial disfunction evidence....Went to Dr. Boles' lecture today. You MUST get genetic testing done and get it analyzed by a mitochondrial functional disease expert like Dr. Boles. His website is: molecularmitomd.com/ . You can get whole genome testing done these days for $1800 and it takes an hour. It cost literally a billion dollars 15 years ago. He is successfully treating ion channel mutations with off label medication treatments and supplements that affect the workings of the mitochondria. I have seen "miracle" improvements and there is real science behind all of this. My father is a world famous scientist who works on mitochondria (and aging and nutrition).

Here is a page on Dr. Boles' website where he talks about functional diseases.

Yes. I’ve PMd you.

Thank you so much AnimalMystery

I'm living with FND OP,mine happened one year after having my 5th DC.

When it first happened they thought I'd had a massive stroke that I wasn't going to pull through.

I've been living with FND for 10 years now.

Not sure if this research information will help to give you more information that you can review with your doctor, but have you considered talking with the doctor about CoQ10? Research: www.ncbi.nlm.nih.gov/pmc/articles/PMC3978538/
www.ncbi.nlm.nih.gov/pubmed/23574157

Anyone around? He's worse and I'm losing it

Anyone around? We're back in hospital. He improved instantly. What am I doing wrong at home? Feel like my head is about to explode. Look totally shit and exhausted, just want to walk out if hospital and not stop walking. Ever.

Hi op, I heard a neurologist talking about her special interest of FND on radio 4 a couple of weeks ago. She sounded just brilliant- her name is Dr Suzanne O’Sullivan. I just wonder whether it would be worth trying to get hold of her for some further advice? Sorry I can’t be of more help.

Thanks cloud I will look her up!

A professional dancer with fnd