My first post, eek! I hope it's useful to someone. Basically I think the article I stumbled on (even though it's from 2005) highlights a lot of reasons why patients might find it hard to accept an FND diagnosis. So, I don't know why but I decided to write to the author. Said article: acnr.co.uk/pdfs/volume4issu...
So here is what I wrote..
Dear Dr Stone,
I have recently been diagnosed with Functional Neurological Disorder (functional stroke/weakness/facial spasm/vocal dysphonia) and came across your article on the condition and the suggested ways in which doctors are encouraged to diagnose the disorder. I only write to you to express my surprise as the content is rather disheartening to read from a patients point of view and somewhat discredits the whole diagnosis process. I am struggling to accept the diagnosis and after reading your article I am even more unsure. I have just realised (after writing all this!) your article dates from 2005 though I still feel the points made below echo true today so I will still send this in the hope of something positive may arising from it.
I feel that as a patient it may be of interest to you to know an example of why an FND diagnosis is so difficult to believe (from my point of view of course!). The doctor I have just seen followed a similar pattern to the one highlighted in your article but the patient sees through this right away, as if the Dr is actively looking to blame a functional disorder rather than accurately investigating your tests, medical history and symptoms. None of my medical history (which is very much organic) was taken into account and results of an MRI taken a year in the past were just assumed, there was no scan or medical files there. A very viable and also organic condition which began at the same time as these attacks was also brushed aside. More time was taken in 'convincing' me that the condition is functional rather than finding out the course of the symptoms. This, of course, does not inspire a great deal of confidence.
You end your article on such a positive 'moving forward' note yet spend the vast majority of the it 'teaching' doctors how to mask the psychological elements and terms of the condition just to mollify a patient, which in itself I feel is wrong because you are 'assuming' the condition from the start of the consultation. Therefore, your consultant has already presumed the outcome and spends the remainder of the appointment picking out certain elements from your history to prove their diagnosis. Any number of conditions mimic the symptoms listed as part of FND yet there is little care in checking that it's not those conditions, rather than proving it 'is' functional. All this is seemingly determined on the raising of one leg and the strength of the other? Yet what isn't mentioned is the strength passed down from the hip which can sway the outcome.
Dental influence on neurology is also brushed aside yet a paper written in 1935 by C. Bowsler Henry (Cornell University Medical College Library), highlights the link and between neurology and dentistry. Although it primarily covers neuralgia, there are many links to case studies of patients suffering the same or similar 'functional' effects yet recover fully after having embedded or impacted molars removed. I have included the document with this email should you happen to have any interest in that matter. However I will quote this passage which I feel is important."In a number of these cases the symptoms were neurological rather than dental, and in some of them the patients had been treated by neurological methods for considerable periods of time without benefit, only to be relieved immediately as soon as the real cause was discovered. It seems to me, therefore, worth while to put some of these cases on record in the hope that similar errors in diagnosis may be averted in the future." - C. Bowsler Henry
This patients trust doctors who display integrity, accuracy and sometimes simply by seeing they are interested and want to help. It is apparent that FND is a condition that is not properly understood yet and therefore patients should be told this, not be fobbed off with 8 sessions of CBT. If 'your symptoms are very much real' as doctors hasten to tell you, surely the healthier approach would be to look at those symptoms and provide direct aid for that area and at least take steps to make them comfortable and monitor the condition. My experience with doctors so far is that either they 'sympathetically' refer you to their peer group (if they are seen privately) or they show little interest and tell you that it is anxiety, even with no evidence or history to support this. Determining a patients stress to aid this diagnosis is also an area I feel is a very inaccurate way to perform a diagnosis. If you are suffering with FND symptoms of course you are stressed and upset, it is a horrible situation to live with, that is logical and everyone would feel this way in the same situation. In the first instance I was diagnosed with 'functional stroke' by a doctor who I'd never seen and didn't even work in the hospital.
My belief is that it's a hard condition for the patient to come to terms with and accept, not because the patient want more tests or attention (perhaps some do!), but because of the manner of the consultant/consultation. I honestly believe that if this was addressed properly and better criteria was put in place to diagnose the condition it would reduce the number of unnecessary appointments and increase the chance of the patient finding the appropriate management or treatment of the condition.
I thank you for your time in reading this and hope it may have at least highlighted something useful.
Link to the Neuro/Dentisty Article: jnnp.bmj.com/content/s1-16/...