No idea : Diagnosed with fnd 4 months... - Functional Neurol...

Functional Neurological Disorder - FND Hope
3,608 members1,936 posts

No idea

Sparticas123
Sparticas123

Diagnosed with fnd 4 months ago on top of a broken neck and spine 2 strokes I am peg fed through pipe in my stomach bed bound does fnd actually exist or is it made up by doctors that have no idea wot is wrong with you I have now seen 5 doctors been assessed by mental health services which I passed 100 percent non of them have ever heard of it I have not found a doctor wot has yet so how can you be treated for it you can't all the doctors say IL have to Google it never heard of it they expect me to take 37 meds a day I replaced them all with canabis oil stop's the fits spazums pain only thing that does work without giving you loads of bad side effects wot IV realized is with fnd they throw you to the lions all I'm told is thers no treatment you have to live with it and your own you most probably know more than the doctors about it lol I'm bed bound 24/7 I sit and read people's stories and it seems to be the same all over the world non of the doctors have any idea on how to treat it so plain and simple if you get diagnosed with fnd your knackered because nobody has any idea how to cure it I spoke to a so called specialists in fnd at Sheffield were they have a specialist unit for fnd sufferers and all he said is you can try and manage it but their is no cure or any treatment that can get rid of it they throw all sorts of meds at you because they have no idea I have yet to find one doctor that makes any sense out of it they pass you from one medical team to another y non of them have any idea wot they are talking about Wen it comes to fnd world wide the doctors are complete rubbish I have not seen one person cured of fnd the medical services need to bow their heads in shame they have no idea wot causes it how to treat it so it looks like we all have to manage ourselves and just try to help each other with things that work best for us through trial and error

4 Replies
oldestnewest

hi,

Yes, frustration is common with this diagnosis. And a whole lot of anger too. It used to be called psychogenic and many other terms - there's a list on the FND Hope website. It's always been about, it's just got a proper name now that indicates the cause ie. it the functioning of the brain and not due to a disease. People used to be just be accused of putting it on and malingering. There's still a lot of that about - unfortunately.

Prof Edwards at St Georges in London is key in England and Dr Jon Stone in Edinburgh. They have been researching the longest. It was Prof Edwards that put people (including himself) through an fMRI and found out that it was the way our brains are working and that it wasn't psychological - he even add the qualification of psychologist to his occupation of a neurologist to prove it. He fought for the renaming of it to hopefully tackle the prejudice.

A history of abuse can double your chances of getting FND, but is not the cause or the answer - just a risk factor. It's usually injury, infection, inflammation and sometimes unknown what triggers it.

We are guinea pigs and this is the start. Research takes years and lots of money. There are good stories out there. It's just people that are having the worst of it are more vocal and need to reach out. The recovery rate (but it still can reoccur) was about 2% before and now it's coming up to 70% if you can get the right help.

What may help you is getting your vitamins via sublingual sprays where available - if you can take them without choking. PEG feeding can upset your gut. If you're stuck in bed you'll not be getting enough vitamin D and that has an impact on symptoms and you'll not be making enough serotonin either (important with or without FND). B12 is also key and not everyone can get enough though their gut, sublingual sprays cut out your gut going straight into your blood. Magnesium oil massaged into the skin can help with spasms, cramps, pain in general. It also increases your serum magnesium faster than through your gut. Supplements can take months to see any difference. There's a list on the FND website under Healthy FND Living in the nutrition section.

It is possible to at least improve your mood and hopefully find some quality of life. It's understandable why you are so frustrated. You are not alone. It is real and is not in your head. It hasn't been "made up" and it's accuracy of diagnosis is 95% which in the scheme of things is higher than most things. If you need more help contact the FND team on the website.

I hope this helps. xx

Sparticus, since you are bed-bound, I recommend that you read or listen to the Kindle version of the book Functional Neurologic Disorders, volume 139 of the Handbook of Clinical Neurology. It is pretty interesting, and a layperson can read it. If you don't have a similar device already, I recommend that you get an Amazon.com Echo Dot, which can read you some Kindle e-books, play music, and tell you the news.

People on this website might be able to help you more than the practitioners that you are given. What are your FND symptoms? Think positively about your body and have confidence that you can reduce your FND symptoms; this increases the chance that your FND symptoms will subside. If you have a bad FND day, maintain hope that you will still get better. FND is real. It once was called hysteria. Herodotus wrote about it.

Since I had 2 strokes I can't read or write anymore my carers do everything for me I am stuck in bed 24/7 it takes 23 hours a day to give me feed water and meds through my peg in my stomach I have two to 3 fits every day I have been treated for elelepsy for ten years now they say I was misdiagnosed and it's fnd only been having fits since the stroke which left me paralysed down the right side of my body Wen I had my stroke I fell 70 ft on to scaffolding breaking my neck c1 and my back in 5 places I were a body brace and neck brace in bed 24/7 I have high blood pressure I'm diabetic have angina need a new left hip and knee I have four prices of bone floating around in my back they say I need 3 major opps but they won't do them because of my c1 break in my neck is to unstable and no anesatis in the country will touch me as though I haven't got enough wrong with me then the neurologist tells me IV developed nfd because of the high impact injuries IV had to my spine and head I have to blow my nose 5 times every hour because my brain thinks IV got flue the left side of my body seems to have a a mind of its own with spasms I get pain so bad I could shoot myself but because of the long term being over medicated I have problems with my liver and kidney so they have had to ween me from 53 meds a day to 6 but give me no pain relief at all so I have to youse canabis oil for the pain I'm cafeterised because I'm stuck in bed 24 7 I can't get any treatment for my fnd IV changed doctors 3 times and still have not found a doctor that has ever heard of fnd so wot chances have I got of being treated non the mental health crash team came to assess me and said I was fine and have no mental health problems at all and won't be coming again how come if fnd is not a mental problem y is the first thing your neurologist does is refer you to the mental health team and how come doctors have never heard of it the mental health team have never heard of it because I'm unable to travel to the specialists so called centres for fnd in Sheffield and London I'm goosed my doctors say they can't treat me for it because they don't know how my doctors say if your nurosergens can't fix me wot chance have they got non so IV been left to the wolves with no treatment at all

It sounds like your "fits" are dissociative seizures, which are FND.

When did you break your C1 in your spine (what month, year)?

My psychologist had not heard of functional neurological disorder. FND is a dissociative disorder, which would be classified under psychology.

There is a workbook called "Taking Control of Your Seizures: Workbook (Treatments that Work)" for 38 British pounds. It is for a 12-week program. You would do a bit each week. Doing the book may cause an increase in dissociative seizures in the first 1-2 weeks. The patient is supposed to talk to a therapist about the book each week. I could try to act as the therapist for free, though writing to you or by webcam (Facetime, Facebook video, Skype, Google video, Oovoo). Your carer could help you do the workbook. Would you like to try this? A study found that 11 out of 17 completers of the workbook and therapy had no seizures/week by their final therapy session, and 16 reported a 50% reduction in seizure therapy.

For your high blood pressure and diabetes, weight loss could get rid of those (but I don't know how much you weigh).

You may also like...