How do we report misdiagnosis with 'FND' or when the diagnosis hasn't been made for the acceptable reasons?

[210272]

When I got re-diagnosed with the rare neuro condition I have, I asked how I could report the misdiagnosis I'd been given between the original diagnosis and the re-diagnosis. I was told it wasn't a dx, just an opinion and that the hospital trust didn't keep stats about it so it won't get recorded as a misdiagnosis by them. So I don't know how to donate my data about this. Since my 'functional' diagnosis was not given for the reasons it can be (eg the Hoover's sign), I'm also interested in how people report when their 'FND' diagnosis wasn't made according to the current protocol.

[artmom]

A ‘functional diagnosis’? Just a ‘functional opinion’? At their ‘functional hospital’?

Maybe make a formal complaint and then it will be reported? Have to say I never considered the criteria for dx of it. Are they stated clearly anywhere? (Without perhaps having to visit goddam J Stone’s site?)

[210272 in reply to artmom]

Oh I did make a formal complaint and it was during that process I asked for it to be recorded as a misdiagnosis since my (then) primary care team kept insisting that I accept it. But hospital said 'no'.

No idea if the criteria for making a dx are stated anywhere other than on the main thought leader/content provider's site.

[Hidden in reply to artmom]

The criteria for a positive diagnosis of FND are Hoover’s Sign and the tremor entrainment test (the one where they ask you to touch your nose while other hand is out).

A friend with Lupus who works in a large neurology department in a US university hospital commented that these went in the cupboard as unreliable about ten years ago and haven’t been taken out since in her department.

You can google both tests and learn more without going on the “goddam”JS site 🤯🤓😏

This is best link I’ve found, apart from Wiki, because it also points to some of the weaknesses of this test. Maybe this is why it went into the cupboard along with the broken Dyson?! jnnp.bmj.com/content/74/4/432

[Dave_1]

Hi, I am sorry to hear that you have had an alternative dx given. I am not really surprised as the guidelines are so vauge and many neurologists are still on the fence about the whole FND condition.

One point, and dont take this the wrong way, but it is possible to have more than one condition at the same time.

Initial complaint should go to the hospital. Then your local governing Trust.

If you wish to persue a claim check your Insurance policies as they often include legal advice for free.

Hope this helps.

I am not qualified to give professional advice.

Take Care

[210272 in reply to Dave_1]

Thanks, Dave_1 It was some time ago and I'm all done with the psychologically damaging complaints process but I keep hearing about people being misdiagnosed with 'FND' who have both rare and common conditions. Thankfully my neuro isn't on the fence about 'FND' and would never dream of diagnosing anyone with it, given the amount of gaslighting it involves.

Yes, I know people can have more than one condition but thanks for the reminder

[eviedotty]

I am so grateful for this post as I am weeks from the diagnosis of FND. I am on new care plan for an existing condition of dystonia. Long story short...5 months or there abouts in the success of this plan has been 100% and to be clear this means that my life is no longer at risk in respect of respiratory muscles locking down with spasms that go on to cause respiratory and cardiac distress with the outcome of a heart attack you are not coming back from. At its all time worse the arrest team called my family in to say their goodbyes but here I am and very grateful to be here.

I was told there was nothing else that could be done for me as the baseline drugs used in Scotland had all given me a really poor outcome and that would be correct. Now I had done some research based on something I learned from a support group and is used as a baseline treatment in America.

I brought the information to my clinic appointment and was basically laughed out the room. My new care plan became call an ambulance. The outcome of this was into a ward for 3 weeks because thats how long it took for a Neurologist to come and see me. The out come of this was to be sent home with a drug that had already been red flagged to me. The outcome of this was my own GP to stalk me by phone with major concerns that I even had this said drug in the house.

Now I bullet point the story as it is very long, frustrating, exhausting etc. So moving on I saw nothing to lose and everything to gain by putting myself on the new tablet which can be bought over the counter at any chemist and indeed I already get on prescription for another issue unrelated.

I give professional respect by keeping any correspondance third party so no Doctor was named in this process as I did need them on board. I keep a daily journal for my condition and from the start of this trial I typed a brief summary of the week in respect of progress and issues arising and any action taken to resolve the issues. By arrangement with the relevant admin staff I email this to both my own GP and to the Neurology Team in charge of my care...no response!

Now I hit 2 major bumps in the road to recovery and desperately needed medical support that for me wasnt there...hospital response...laughed out the room so no point in going there...GP response ...if Neurology have nothing for you then there isnt going to be anything we can offer as the condition is so rare blah blah....The pharmacist who was involved in my research was the only person I could speak to and she strongly encouraged another go at getting medical support based on nothing more than the beyond anything I could ever have dreamed of success.

I took support from the support website and got over the first bump with yet again a level of success I could not have dreamed of and so time moved on and I hit the second bump in the road and this was major as it looked like some pretty nasty seizure type activity and was getting now treated as seizure by emergency services....

I got referred to another member of the Neurology staff and she proceeded to ignore the reason for the referral, totally disregard the new care plan, put me into a situation were major triggers caused major issues and videoed the whole thing. Now based on this video I was given the FND diagnosis...no patient history, no physical exam nothing just a severe state of stress and distress that was as such that my son told the staff if we were at home and i was in this state he would be calling an ambulance...he was told I was fine...rescue meds were taken helped by my son...

Now and to my shock and horror in equal measures...the shock being a good one! I find that the issue that looks like or results in seizure type behaviour and is treated as such is now looking like pinched nerves in my cervical spine. I have an appointment next week with my own GP to have this confirmed as an MRI scan did show this some years ago so its a good place to start... now the response to the pinched nerve being so severe was suggested by OT to possibly need further investigation but it has been called FND,,

I am making plans now to have this removed from my medical records and considering a complaint...so I thank you for sharing your story

[210272 in reply to eviedotty]

I recall reading your history elsewhere and being horrified. The people who laughed you out of the room should be ashamed for representing their profession so badly.

The complaints process can be stressful and time consuming so if you can avoid that, I would. If I could have my time again I would have gone straight to my M.P.

[stripybutterfly]

I'm wondering this too.

I was diagnosed with 'conversion disorder/ FND'- and I didn't meet the criteria as they hadn't done any examinations. Mine was negligent, for sure. I was admitted to A&E with 'seizures' and as they saw a history of depression, made an immediate diagnosis of 'conversion disorder'.

And having CD/ FND on my records hindered me from getting a second opinion.

I now have the correct diagnosis (Orthostatic Hypotension causing blackouts and seizure like movements).

[210272 in reply to stripybutterfly]

That's terrible, stripybutterfly. Can you face reporting back to your local 'FNDHope' admin about this and asking them to pass it up the line to Jon Stone? He needs more evidence of when and how 'FND' misdiagnoses are happening if there's any chance of him doing anything constructive about it.

Also, you and others have nailed it - these inaccurate labels hinder patients when seeking a second opinion. This leads to delayed diagnoses/delayed treatments and has a knock on detrimental effect on research, too.

Well done for persevering until you got your correct diagnosis and I hope you are being treated (in all senses of the word) very well now.

[stripybutterfly in reply to 210272]

It's been very validating to get the correct diagnosis.

But I will never get over the trauma of how I was treated. I was diagnosed with CD/ FND 5 years ago. So I've gone 5 years with an undiagnosed condition- and my neurologist thinks I've had low-level brain damage from the constant fainting and lack of oxygen to my brain. I've certainly had memory issues from it.

I haven't had my records changed, I'm hoping to put in a complaint. They diagnosed me too quickly without looking into other possibilities for my 'episodes'.

And what kills me, is that Orthostatic Hypotension is diagnosed with such a simple test- just measure your BP sitting down then standing up.

I saw a cardiologist privately, he diagnosed me. And he didn't have all my records to prejudice him.

It's frustrating to see how many are misdiagnosed with FND- and I don't buy that it's 'no more misdiagnosed than other conditions'. I think that's completely untrue.

[210272 in reply to stripybutterfly]

I've seen so many instances of people getting PTSD as a result of these misdiagnosis and I recognise it because I had it too. Only it's not 'post' when it's on-going for 5 years, as it was for you. Here's what a fantastic psychotherapist told me 'I view PTSD as a sane response to an insane situation' but even knowing that, I can empathise with you re not getting over the trauma.

How can they know 'FND' is not more misdiagnosed than other conditions if they don't know if each 'FND' dx was made according to the correct method of diagnosis, whatever that is, these days?

[stripybutterfly in reply to 210272]

I know, right? It's totally illogical.

Doctors are way too quick to label things as 'functional'. It's a dangerous diagnosis.

[artmom]

Well if the diagnostic criteria is as twitchytoes says, I was dx without that and based on my history of depression also. I didn’t present with tremor or weakness. Not sure if hoover’s was done but think entrainment might’ve been. But how to you use a test for something that isn’t there? I remember thinking afterwards, when in doubt about the dx, ‘but he’s an experienced dr, he must’ve seen from the outside I’m really ok inside’!

I never knew that’s what gaslighting meant. But oh yes. As if I wasn’t already trying to work out how my mind could be causing these crazy symptoms, along come the doctors. Par for the course (gaslighting) when you’ve a history like mine. Why I generally try and avoid drs.