Hello all.

[JHutton1994]

Hello, all. Thanks for your replies to previous post entitled 'FND diagnosis. Complaint.'

I went through PALS who contacted neurology on my behalf, I just got off the phone with neurology 5 minutes ago. Was told that 'what tests were carried out were at the consultant's discretion and is not something I could complain about and that it is normal to get no treatment for FND' as apparently there is none and that I needed to look on Google. I am beyond shocked and disgusted. She did say she would try to get nerve conduction study fast tracked as apparently I was supposed to wait until May for that. I will be asking to be referred to a different neurology dept. for a second opinion at the earliest available opportunity. People were saying on the previous thread that this is not hysteria, well it's certainly being treated like it is, at least by this neurology team.

[Shimmyaway]

Can you let the person you spoke to know, you have done your googling and found there is treatment, even in the Uk, it 'just' needs funding and rolling out..so could it be she needs to do some googling too? See link below.

link.springer.com/article/1...

[Aberheart]

What an awful experience you are having. Definitely go for that 2nd opinion. I have had full body MRI, Nerve conduction tests and full blood works. I have now been referred to neurophysio, neuropsychiatry And speech and language therapy. My neurologist reassured me my symptoms were “real” and could improve and respond well to therapy. He gave me an official diagnosis and wrote letters to my GP. He did admit that some Doctors did not understand FND but was hoping that would change. He was also a 2nd opinion neurologist that became my consultant after complaining through PALS. The whole process with all the waiting times has taken 2 years. Don’t give up. I hope you find a good decent neurologist soon who is willing to listen and help you with your conditions. Stay hopeful .

[Lady4 in reply to Aberheart]

Great you eventually have a good multi-discriplinary team on your side.

[Lady4]

Hi hysteria is the historical name (mainly for women, men were deemed stressed/overworked), then conversion disorder and then FND.

The neurologist still needs to tell you what "rule in" signs made her come to that diagnosis, fact.

If you plan to see another Neurologist check out my previous posts, pretty sure I posted one on "what to ask" as it can be pretty overwhelming and being prepared is key to getting the answers you need.

Hope your appt is fast tracked. You may not find another Neurology dept local but ask for another Neurologist if possible.

[210272]

Hi JHutton1994 - I missed your original post so am late to this conversation, sorry.

'Hysteria' is one of the key words in the latest hypothesis about FND which was published last year so it hasn't gone away, yet, which is bonkers. And conversion disorder got lumped under FND (which is already an umbrella term) in the last iteration of DSM although it would be tricky to unravel why that decision was made since non disclosure agreements were signed by the people who put it together.

If s/he did tests on you at his/her discretion but without your fully informed consent then you certainly have a good reason to complain. And, as Lady 4 said, they have to give you the ruling in signs when making this dx and it must not be made on the basis of normal test results alone.

A badly given diagnosis needs recording in the same way as a misdiagnosis since it gives neurologists a bad name if they carry on telling people to 'google it' etc. If you have enough spoons it would be worth giving feedback about your experiences via Stone's self help site so that FND education can be improved and others won't have to go through what you went through.

Treatment is possible (as it is for most neurological conditions) and it is very, very wrong of them to say it isn't so if you do give feedback I would also ask for a recommendation for someone who can help you so that you can ask your doctor for the appropriate referral.

[Westie_1]

Hi JHutton, I honestly feel like it’s a lucky dip on how you get treated and by whom. The Walton Centre refused to see me again even though they can clearly see my migraines are ramping up my face and my balance both do not want to play nice. It seems my experience was the same as yours. They have never offered me any help apart from medication and I certainly was never told how or why they came to my FND dx either. So I am glad from reading some of the other posts that things are changing.