Newly diagnosed FND and removal of essential care for other conditions

[Lady4]

Maybe they should do a poll on this, I wonder how many people this has affected as I hear it time and time again, thoughts?

[Van604]

I was refused follow up for an enlarged thyroid by an internist after she saw FND on my chart. She said I was "well served by a psychiatrist". I moved to a different city but now I can't get a doctor at all - I've been waiting over two years. It's a double-edged sword though because at least I'm not being fobbed off or told it's all in my head any more... Yes, I think a survey would be useful. At the last FND Society conference, someone said FND patients have a reduced life-expectancy, but they didn't know why. I think it's probably because our other health problems are neglected.

[Lady4 in reply to Van604]

That fact sadly doesn't surprise me, are you in the U.S ?What should the process be for that condition? I would definately think regular monitoring and what causes it to enlarge?

My dad had to have his removed, they noticed it because he had a persistent cough and it was a health concern.

I am guessing you had done your research.

I hope you don't have to wait too long and it isn't causing you too much pain.

Hugs xx

[Van604 in reply to Lady4]

Thanks. No I'm in Canada. The enlarged thyroid was discovered on an MRI at the hospital and the neurologist told me to get it followed up. But because I was diagnosed with FND, it seems like all other doctors just think I'm nuts/ a hypochondriac.

[Lady4 in reply to Van604]

Then the Drs should educate themselves! Don't take no for an answer.

[210272]

This is interesting, Lady4. Are you saying that once people are diagnosed with FND that Van604's experience is common IE that other symptoms go under investigated, under diagnosed and under treated? I wonder if this stems from the days when it was thought that investigating or treating other symptoms was thought to be counterproductive because it reinforced the belief amongst patients that something was physically awry when the consultants had concluded that it wasn't? Technically (IE in med speke) I think this is known as 'diagnostic overshadowing' and this paper 10.1093/omcr/omaa073 highlights the need to recognise and avoid that. It also demonstrates that patients meet 'psychological resistance' from neurologists if they want to change their diagnosis but it does not explain why neurologists behave in that way or the impact of that behaviour on patients/the misdiagnosis stats. Plus it's limited to patients wanting to change the dx to a 'structural' one whereas some patients may want to change it to a genetic/cellular one (eg migraine, one of the Ataxias and/or a rare condition).

I have certainly heard from people with FND that they are unwilling to engage with doctors, no matter how unwell they are, because of previous negative experiences with medical professionals and who have developed medically induced CPTSD (aka 'a sane response to an insane situation') as a result of these negative experiences, which can be traumatic if they constitute a 'threat to body, threat to self'.

[Lady4 in reply to 210272]

Its just something I see come up in posts, that individual were receiving a care plan for one condition and as soon as FND dx, it was not continued/renewed. I don't know the causes of enlarged thyroid but I would have thought regular monitoring would be routine.

[210272 in reply to Lady4]

It bothers me because human rights are being eroded in the process and I'm seeing exactly the same thing happening for people deemed to be in the Subsets of FND eg those with a PPPD label who have had their requests for further investigations (eg regarding migraine, head injuries, CSF leaks etc etc) denied or delayed. It is also very difficult to record a misdiagnosis of PPPD which means the overall FND misdiagnosis stats may be inaccurate.

Meanwhile I found it interesting that in the UK 90% of complaints about FND were due to disagreements with the dx but the paper about it doesn't seem to address the notion that the dx may be inaccurate and does seem to uphold the FND dx.

To cite: Bolton C, Goldsmith P. Complaints from patients

with functional neurological disorders: a cross-sectional UK survey of why patients complain and the effect on the clinicians who look after them. BMJ Open 2018;8:e021573. doi:10.1136/ bmjopen-2018-021573

► Prepublication history and additional material for this paper are available online. To view these files, please visit the journal online (dx.doi. org/10.1136/bmjopen-2018- 021573).

[Lady4 in reply to 210272]

I noticed Communication style and patients wanted further investigation were the second and third highest complaints.

[210272 in reply to Lady4]

Those are great observations, Lady4. A well communicated diagnosis seems to be key but there are still far too many people (mostly women) being diagnosed with FND who are not being told the dx during the consultation. Or, if they are, and ask for further information they are then told to 'google it' which is unacceptable.

[Lady4 in reply to 210272]

I must admit I never read it all, it kinda annoyed me about how it goes on about affecting their mental health and the dx let alone a mis dx is devastating to the patient and carers/family.

[210272 in reply to Lady4]

Yes, I felt the same and they do not seem to acknowledge how difficult it can be to get a misdiagnosis formally recorded or even that misdiagnosis is possible.

[Lady4 in reply to 210272]

Crazy eh, people make mistakes every day. My advice to them is, "own it" and "learn from it".

[210272 in reply to Lady4]

Agreed. Plus we are often invited to put in complaints to improve services (so do so out of a sense of civic duty) and if all we're going to hear back from the people involved is that our complaints are a waste of their time (as per the information in that paper) it doesn't bode well for improved services. Maybe you could write a response to this paper for the BMJ (if you decide to do that, there's a word limit and it's a good idea to use references so I'd be inclined to point them in the direction of the relatively new GAUK 'good diagnosis' guide) from the patient/parent perspective.

[Lady4 in reply to 210272]

At least it said some changed the way they did things but not all. Currently done with the lurgy, so just about managing to do the basics today.Like I said, never read it all.

[Lady4 in reply to 210272]

An Overactive thyroid (hyperthyroidism), which can cause swelling on the gland is treatable.