Diagnosis

[rockyandfrank]

Hi

Has anyone been diagnosed with Neurological functional disorder?

[pinkvision]

Explain a little more, everyone with a brain injury has multiple neuro-disfunctions, sensory, perceptual and cognitive etc.

[rockyandfrank in reply to pinkvision]

HiFollowing treatment for a aneurysm I have many issues - my right leg will not lift properly it can also just give way and so walk with crutches, I struggle to look after myself, I have problems with facial recognition, I am so clumsy I have smashed every glass in my house. I have severe short term memory problems. I was signed off from work in March 2019. After waiting to see the consultant for 2 and a half years he could/would not answer my questions - What has happened to me? What is wrong with me?

I consulted a solicitor who advised I see a neurologist privately - who has diagnosed the neurological functional disorder without looking at any imaging. I think the ramifications are that any legal case would fail. This diagnosis means that ALL my symptoms are phsycological and not physical.

[pinkvision in reply to rockyandfrank]

This sound like you are learning the reality of the health service lottery in finding someone 'who knows.' Your condition is neuropsychological, that's what neuro dysfunctional disorder means. Two names one meaning. So it's not all imagined in your mind rather it's created by neuronal damage, however it is micro damage and cannot be seen in a scan.

The good news is that many of your functions can be recovered and over a number of years maybe all of them.

The first thing to do is to go back to your GP and get a neuropsychological referral to get tested and find out what exactly your neurodysfunctions are.

Your health authority may have a brain rehabilitation service to help you work through the issues and redevelop your functional problems.

Contact the stroke association too, they can also give advice as well as headway to help you navigate the health system and get the correct treatment plan. In a way it depends a lot on how good your health authority is. Can I ask what area of the UK you live in (assuming you are from the UK).

Another option is to get a referral to a psychiatrist, they deal with the fallout of strokes too.

Let us all know how you get on. Now phone your GP and get the ball rolling.

[Painting-girl in reply to pinkvision]

Good answer PV - but a neuropsychiatrist would be a better bet than a psychiatrist, because they start from a brain injury perspective.

[Painting-girl]

Hi R, I think it's a label sometimes used for post brain injury problems - the ones we all have. Whether its a useful label or not , depends very much on the care you might get as a result I suspect?

Are you in the UK? My neurologist referred me for a second opinion from another one who has a keen interest in post concussion issues, and sort of said in a confidential tone as I left the clinic - 'let's hope he doesn't say it's all functional'. But I am none the wiser as to the ramifications I'm afraid. I've copied in Leaf as I think she's had the same diagnosis? I would be a little annoyed if women are more likely to get a functional diagnosis. But if it leads to getting good rehab I suppose it's ok?

Leaf100

[rockyandfrank in reply to Painting-girl]

Hi thank you for replying I think the ramification is that ALL symptoms are phsycological and not physical. I have not had any rehabilitation or physio.

[Leaf100 in reply to rockyandfrank]

HI Painting_girl and R&F

I am in Canada and got the FND diagnosis supposedly as a modernization of the Post Concussive Disorder label that appeared on my paperwork before. The FND list of symptoms I have seen has many bullet points not related to psychology at all - it means that the brain does not process information the way it did before - meaning signals are not received or sent properly. People with dystonia here are also put in the FND category.

What happens is signals are sent and received by the humunculous of the brain, and various locations send and receive signals back. Tremors, for example, are caused when the spatial information returned does not match the desired location being sent, so the body is constantly adjusting itself. This has nothing to do with psychology at all. The information can be mis sent or misinterpreted for many reasons, none of which show up in the kind of tests we have available now. (Historical this was called convergence disorder and lumped in with the psychological because it saves insurance companies money - they don't have to pay out as much for psychological issues as they do for others.)

I took a 6 week group class that went over what it all meant, and they are just developing new language for it based more on computer science, because most of the works used to describe how these things work are borrowed from the psychological, because this is the first time medicine has bothered trying to talk about it in some more formal way. It'll take time, but it is coming. A lot more neurologists are aware of it, and actually a very high number of cases they get involve a functional disorder of some kind. It is really common, in other words.

There is a Hope FND branch in the UK and I would try getting in contact with them - the link is in my post above.

Leaf

[Painting-girl in reply to rockyandfrank]

No it's definitely physical R&F. Concussion or more properly MTBI doesn't show up on CT and hospital setting MRI. But does show up on more advanced scanners like FMRI that are only really available in research settings. It's now known that MTBI physically causes a disturbance in the white matter of the brain. )Depression also causes a disturbance in the white matter but the brain can't tell the difference). What's been found is that SSRI and SNRI antidepressants taken over a long enough period do physically 'straighten out' the white matter - so actually have an actual therapeutic effect in both cases. (Interestingly I read the other day that one of the things that increase BDNF in the system, and therefore neurogenesis, is actually antidepressants - alongside exercise)

A prescription of an antidepressant (preferably by a neuropsychiatrist) isn't saying 'it's all psychological'. Mine was very clear that once any concomitant de-conditioning and depression were resolved what I was left with was the result of a brain injury.

[Leaf100]

Hi R&F

I live in Canada, and had my injury quite a long time ago. My diagnosis went from concussion to post concussive syndrome to functional neurological disorder, functional movement disorder, functional cognitive disorder.

My doc explained they came up with the FND label to get away from people thinking it was all psychological, because it is isn't - and if you look at the information page for FND most of the bullet points have nothing to do with psychology. This is evidently part of a process that will move brain injury out of the psychiatric section of the DSM into a new section, where things like MS and Parkinsons will also show up.

Yes, insurances and so forth try like mad to say it is simply psychological - another label they used to use was convergence disorder - which is a hold over from the war and another name for shell shock, basically. Yet, I see the M a y o C l i n i c website still puts the two together. SIgh.

The diagnosis is not meant to say all your issues are psychological at all. What it is meant to do is make a category that is not pscyhological and not down to physical damage that shows on scans. Some physical damage, such as axonal shearing , is at too small a level to show up on scans, the diagnosis is clinical (meaning symptom based).

I have a normal MRI. I did have a test I paid for privately, which hooks electrodes up to your head and takes various measurements - and that clearly showed the inflammation and areas of the brain that were over and under active.

I do not believe FND is well understood. Though, from what I have read elsewhere on the forum, it seems some go from FND as a diagnosis to Post Concussive Disorder, though from what I have been told here they are basically the same thing - just that some docs think PCD goes away after awhile - it doesn't - but anyway some seem to like the FND label instead. SImply put, FND means your brain is not sending or receiving signals in the expected manner.

It is tricky when you are dealing with legal issues. Best to consult Headway and see if they know of any specialists that can help you - when it comes to legal issues anyway - the 'my doc is better respected than yours' game seems to get played.

The most important thing for you to know though, is it is not all psychological. There are many sorts of damage that can only be measured on a functional MRI and they don't do them cause they are very expensive - generally confined to situations where they are doing studies.

Here is the link to FND Hope in the UK. There are resources here you may find helpful, as well has Headway

fndhope.org/about-fnd-hope/...

It can be really frustrating to find professionals that understand brain injury, and they don't even always really seem to use the same terms. And dealing with insurance/lawyers is another nightmare of its own.

Unfortunately our injury is not that well understood, though things have improved a lot in the last 20 years.

The other advice I have for you which is very important, is that treatments for mental health are very different than treatments for FND - do not enter any group programs designed for people with mental health problems. Generally speaking, what works for people with mental health issues actually will damage people with brain injury more - and the types of issues people have really rub each other the wrong way. (I had this drummed in to me by my doc back then to make sure I wouldn't set myself back.)

Let us know how you make out. It isn't an easy journey.

best wishes,

Leaf

[pinkvision in reply to Leaf100]

Hi Leaf just read your reply. In London Ontario, the St Josephs hospital brain unit has now adopted many of the functional measures to rehabilitate injuries, especially concussion/post concussion. You may want to check them out and spread the word among the Canadian community.

From my understanding NFD means brain injury.

[Leaf100 in reply to pinkvision]

HI Pink,

Thanks for letting me know. London Ontario is about a 6 hour jet ride from me, so in no way accessible in terms of any kind of rehab. Though, if I run into anyone from the area I will let them know.

I may try contacting them to see if there is anyone closer - so far as I know the nearest one is a 3 hour one way trip by car for me.

FND may not mean the diagnosis was brain injury - people with dystonia get the FND label as well, and I think Parkinson's may also be included, amongst some other things.

Leaf x

[Painting-girl in reply to Leaf100]

I think Parkinsons is a type of BI because of Lewy bodies forming in the brain?

[Leaf100 in reply to Painting-girl]

I didn't know the cause of Parkinson's - you may very well be correct that is a type of BI.

[Painting-girl in reply to Leaf100]

Excellent explanation, thanks Leaf 👍.

Mild traumatic brain injury and post concussion/ FND is still the result of a brain injury, and not a psychological problem.

Yes, being off the DSM would be a really good start.

It's just a historical development that expertise in the brain injury area sits with neuropsychiatrists and neuropsychologists I suppose - and it does suit the insurance companies to class post concussion problems as psychological - if you don't purchase additional psychiatric cover here, they don't even cover it - and even if you do, psychiatric cover has a low ceiling on it.

[rockyandfrank in reply to Leaf100]

Thank you so much for your detailed reply - it is very informative and explains so much. The nuerologist certainly didn't put it that way. I have tremors also - you explained that as well - I have not been able to work that out either. I live in Yorkshire in England and do not know what treatment etc is available in this area. I will get in touch with the GP and start asking questions - thank you again.

[Painting-girl in reply to rockyandfrank]

Probably worth ringing the Headway helpline too R&F for advice and support before talking to the GP. They man the helpline in office hours - 0808 800 22 44.

[rockyandfrank in reply to Painting-girl]

Hi, Thank you so much - I have been livinmg with this for 3 years and was beginning to think I was going mad - no diagnosis, explanation or help. The relief! The GP told me I had a perfectly normal brain and yet it didn't/doesn't work properly. Thank you again.

[Painting-girl in reply to rockyandfrank]

That's a terrible thing to happen to you R&F, I can't believe how hard my symptoms would be to deal with if I'd had to manage all this time on my own. My MTBI was just over three years ago - but I must admit sometimes despite all the help and support I had courtesy of the firm's medical insurance, even now it occasionally still feels super weird - I think remembering what it was like being 'old me' it's sometimes hard to compute translating that into what 'new me' is now capable of.

The general consensus on here is that GPs don't know a great deal about brain stuff. Though I think there's an element that they know that various things can scramble brains, and there's not a great deal that can be done on the NHS, so it all just grinds to a halt at that point.

I suggest that you post something about the 'after effects of aneurysm treatment' next on here, or something along those lines - I am pretty sure you'll get some helpful responses. What did you have done?