Criteria for FND diagnosis. - Functional Neurol...

Functional Neurological Disorder - FND Hope

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Criteria for FND diagnosis.

ariana1
ariana1

I had a lumbar puncture a while ago that came back positive for Oligoclonal bands in my spinal fluid. I had an MRI that showed 'white spots'.

The oligoclonal band test is basically a test for MS. O-bands are antibodies.

Also, when I had the lumbar puncture-my CSF pressure was elevated.

I've also got abnormal eye movements- this is what prompted me getting referred to neurology.

Yet my neurologist has said that my symptoms are 'functional'. She has agreed to keep it 'open' and I am going to fight to get a second opinion, because this just doesn't seem right.

14 Replies
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Hi I also had positive o bands and my brain MRI showed several lesions consistent of demylination however I still get classed at the moment as having central nervous system demylination and fnd it's very confusing I feel your frustration

210272
210272 in reply to gemmah09

Getting classed as having a CNS demyelination seems OK. Are you still classed as having FND/conversion disorder too? If so, I'd question why that dx has been made and ask for a second opinion.

gemmah09
gemmah09 in reply to 210272

Yes I do its central nervous system demylination low vitamin D then it says functional neurological disorder on the letter from the NHS

I think it's where they thought I had fnd originally before I had my brain MRI scan that they still say I got fnd with those other medical problems

210272
210272 in reply to gemmah09

Hmmm - I think they need to explain the basis for you still having a diagnosis of a core psychiatric condition. I know FND/conversion disorder is being over and misdiagnosed a lot in the UK and you're certainly not the first person with low vitamin D to pick up a psychiatric diagnosis.

The diagnostic process for FND/Conversion disorder isn't entirely clear but if they are going to say that you have this, at the very least they need to tell you how they came to that conclusion either before or after your scan.

Meanwhile if you don't think you have FND/conversion disorder I'd ask them to put a note in your file saying that you don't agree with this core psychiatric disorder dx. Sometimes when people do this they then get told that saying you don't have a conversion disorder/FND is a symptom of having it - it isn't so don't let them tell you it is.

Obviously I don't know all the details but from what you've said it is possible that you have been misdiagnosed *and* that the diagnosis wasn't made in the approved way.

Hope you can get enough vitamin D during these troubled times. I have migraine and if I don't get enough I am more susceptible to triggers.

210272
210272 in reply to gemmah09

Hi gemmah09 - I've just seen a great youtube video which might be of interest to you since it mentions demylination and low vitamin D. If you search youtube for Neurology - Ataxia (Gait) - By Wendy Stewart M.D. it should come up. Although it has some complex medical terminology she makes it easy to understand, which helps :)

gemmah09
gemmah09 in reply to 210272

Thankyou

redhead63
redhead63 in reply to gemmah09

I would definitely get the FND removed from your records. Otherwise the Doctors will think you have FND and you will not be taken seriously and get poor treatment.

gemmah09
gemmah09 in reply to redhead63

Unfortunately I am already finding that is the case I am seeing the neurologist in june and will ask for it to removed fingers crossed

ariana1
ariana1 in reply to gemmah09

I haven't officially been diagnosed with FND yet.

But that's what my neurologist is thinking. When I was talking to her about my worsening reading issues, she immediately said that it was a 'concentration/ distraction' issue because I've been depressed.

I was so upset by this, and it's my worst nightmare coming true, that everything say will be attributed to my mental health issues or 'functional'.

I had to butt in, and tell her that I'd actually been prescribed prism glasses by my optician because I've developed double vision.

And I've been telling her for ages that I've had vision changes in the last few years.

Having to deal with doctors like this is really really affecting my mental health, feels like I'm being gaslighted.

She's only now asking for a report from my optician about my vision issues.

And during the Lumbar Puncture, I was told that my inter cranial pressure was elevated, which I now realise can cause balance issues, weakness etc.

I am fighting to get a second opinion, because my neurologist just attributes any symptom I get to 'stress/ depression' etc. Without doing proper investigations.

ariana1
ariana1 in reply to gemmah09

Would you mind explaining your story? Like, how did you get the other diagnosis? Did you get a second opinion? Did you have to fight for it or did another doctor take a look at your case?

What were your symptoms?

I'm also from the UK, so I'd be interested to know how this worked out for you.

Yes, you need a second opinion. FND/conversion disorder is being over diagnosed and other conditions are being missed or disregarded as a result of this. Hope the lumbar puncture didn't result in a CSF leak for you, ariana1

White Spots - I get tired of hearing that too! My MRI has always showed them and last MRI they not only got bigger and deeper but more of. I was told by Neuro in hospital any changes to those spots (lesdions) means MS but now he refuses to see me. Not a fan of specialists anymore.

redhead63
redhead63 in reply to Paddoodlz

Do you have other symptoms too besides the white spots?

Paddoodlz
Paddoodlz in reply to redhead63

I have tons of symptoms. Facial droop, foggy brain, aphasia. I can no longer write, very little speech,. Giberish for words, lack of movement, either in wheelchair or Walker depending on day. Constant tremors in various degrees, full body tremors... sometimes will be able to walk then can't lift a foot. I have more but no need to go on. You?

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