Hello Everyone

[Tigerlilly81]

I am new here obviously. Was a frequent post on the MS board but turns out I do not have MS, I have FND and PNES which is just a symptom of FND I suppose.

It seems MS is a common mimic for FND.

[tabey]

Welcome Tigerlilly81

[artmom]

Welcome Tigerlilly81. I hope you’re well. How were you dx’d with fnd? What changed from the dx of ms?

[Tigerlilly81 in reply to artmom]

I was told that my test results were not consistent with MS. The lesions on my brain are coincidental.

[artmom]

But your symptoms tally with ms? And you have lesions?

[Tigerlilly81 in reply to artmom]

They said a lot of my symptoms can be explained by my chronic low potassium, but the rest are largely psychological. Neurologist said my temporary paralysis, loss of sensation and vertigo are common in people with FND and I would benefit from CBT.

I have been receiving counseling for over a year so far but he said it could take many more years.

[artmom]

Your neurologist has dx’d you with a psychological issue? They’re qualified to do that are they? Saying it’ll take years is convenient. Are you confident in the dx of fnd?

[Tigerlilly81 in reply to artmom]

I have no idea honestly. My therapist told me I have CPTSD. Once my neurologist found that out he was quick to go to FND.

He did suggest that if I am not abusing diuretics or causing myself to throw up I should continue to look into my chronic low potassium since that can't be faked.

[artmom]

Suggesting you’re faking the rest?!

[Tigerlilly81 in reply to artmom]

In his words yes but he does have a language barrier so I let it slide. Normally I wouldn't have.

[Tigerlilly81 in reply to artmom]

Ate you thinking the Neurologist made a rush to judgment?

[artmom]

Absolutely. Similar thing happened to me. Dr discovered my history of depression and it was therefore fnd (‘’well we don’t really call it ‘conversion disorder’ anymore’’). I didn’t really realise how fobbed off I’d been until later. There are some recent and interesting posts here with links to a blog(?) by someone about the inaccurate and inappropriate dx of fnd and the like. And I posted today a link to a paper about the difficulties of differentiating between and diagnosing fnd-type things. I think there are two camps on the forum here. Those who believe in fnd and those that don’t and who challenge its very construct. I know the neurologist said to me that it wasn’t possible for anything ‘real’ (he didn’t use that word but I can’t remember his exact words) to have so many symptoms. This was said to me again recently by another dr who was reading first neurologists letter to me. As if to say ‘with this much it just must be in your head lady’. But then maybe I’m misreading and being overly sensitive...

Are you bulimic or abusing diuretics?

[Tigerlilly81 in reply to artmom]

No, I dont have an eating disorder. It has been assumed but I love food and can't think of much worse than vomiting all the time lol.

[artmom]

I’m pretty sure there was something about research showing very deep brain activities occurring in pnes in the paper I posted the link to today

[Bailey09]

Hi Tigerlilly81

Welcome x

[artmom]

Are you in the uk or somewhere else? I would say my experience is that if the neuro doesn’t know the cause, and even without any further testing, if a patient has a history of something psychological, they will dx fnd. Contrary, actually, to the diagnosis guidelines on the neurosymptoms website. And it has certainly been pointed out on this forum that fnd is a rebranding of conversion disorder aka hysteria, and that neurologists aren’t really qualified to make such a diagnosis. So I’d seek another opinion, if you feel up to it.

[Tigerlilly81 in reply to artmom]

I'm in the US.

Well I have a suspicion that a lot of what I am going through is tied to my low potassium. It's pretty reliable that my symptoms start to ramp up and then I am in the ER and every single time they say the same thing. Your potassium is low.

I don't see how hypokalemia can be a manifestation of a psychological disorder.

I know psychogenic conditions exsist but they don't usually correspond with abnormal lab results.

[JustDomUK]

I’m newish here too and I’m a bit confused by some of the replies posted to you. You see FND is not psychological it’s never been described that way to me by the docs. In fact it’s been described as like a headache. You can’t see a headache on a scan but a headache isn’t psychological in nature. It’s about understanding how the body interprets pain.

Take for example brain freeze when eating icy things like ice cream. This isn’t imagined yet you can’t see that on a scan either. What it REALLY means is that your inner organs don’t have pain nerves to process pain. They aren’t capable of feeling pain. What the body does is borrow and send signals to the brain saying I’m cold (in case of the stomach) and the brain interprets this and produces pain in the head because the head has pain nerves. This isn’t psychological.

I would liken it further to a computer. When your computer goes wrong the first thing you check is the hardware (is it plugged in? Monitor on?). You can scan the hardware and check to see if things are wrong. If there is anything wrong it shows up straight away from the scan. But sometimes you can have a blue screen of death. The PC is not happy and it’s not the hardware. In fact it’s the software. Now both things are real but the software problem won’t show up on any scan.

FND is like a software problem. Again not psychological. I’m really saddened that people have had this experience from the docs caring for them. Stress is a killer. The chemical produced by the body is a useful but when made in huge amounts it becomes quite toxic. It’s rather like overindulging. Stress makes things worse and the brain can become acclimatised to it and it changes. Again not psychological.

I really hope things get better for you. We live each day just surviving sometimes.

Dom.

[artmom in reply to JustDomUK]

I think what people are told about fnd and why they are dx with it and how they are treated must really vary. I think my experience and the experience of others is to be told, ‘you have this thing, there’s nothing I can do about it, it’s in your head/imagination, it’ll go away of its own accord’. Pretty heartless when you consider what some people are experiencing. Also negligent when drs pronounce this with zero evidence (as it is meant to be a positive dx not just from running out of options), as you really cannot ‘prove’ someone has fnd. Can you?

[JustDomUK in reply to artmom]

What an abhorrent way to be treated. I really feel bad that people are told this. You’re right it is a varied mix.

Even the name of it is a give away. Functional meaning something in the functioning has gone wrong. Neurological because it affects the nervous system and Disorder because it disrupts the normal functions. Even the name is not psychological. I accept my diagnosis because it is true.

What used to drive me was the need to have a name for what I was experiencing. I thought that once I had a name for it then I would be able to treat it and understand it. Then finally I would be able to recover from it.

Please understand that my experience is pretty much the same as everyone else’s. Neurologist diagnosed me and then told me to go read it up on neurosymptoms.org. I had a specific diagnosis. Did it make any difference to me personally? No. No one has said you’re going to die from this Dom so that’s a major positive. But no one has ever said to me, it’s not real. In fact what my Neurologist did say was “there isn’t a scan developed yet that can see what is causing this”

I’ve got to the stage that I am not sure I need to be told something is concrete anymore when my feet are firmly enveloped in the stuff :).

I truly hope that if anyone is told it’s in their head and their fault then they don’t take it to heart. It is a survivable illness but curable is debatable even amongst those with the expertise.

Dom

[artmom in reply to JustDomUK]

And what you say does make sense. Except as far as I’m aware the previous incarnation of fnd was conversion disorder. Which was historically known as hysteria. A rebranding took place to make it more acceptable to patients. And how to inform the patient of the dx, their reception and acceptance of it, and consequently the probability of their recovery, is very much a part of the process.