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.
Hi Medsoph, I also contacted Dr. Stone not once (do you know his brilliant website neurosymptoms.org?). In fact, he knows very well how inappropriately we FND patients are treated. But he belongs to the same medical community and has to support what they call medical ethics - apparently, it is not the ethics addressed to us, patients, but rather the one which is addressed to the colleagues (sad, but true). So, most probably he will not be able to tell you much more than "Thank you for expressing your concern". As an FND patient myself, I can not say more than 100% agree with you, the main problem of our unwillingness to accept this diagnosis is the way it is delivered to us. If we are told that the condition is not oganic but still treated like sick people (who we are) - that would be perfectly fine to accept. But nobody in the world would be happy to hear that they "do not have an illness" when they feel ill and are disabled. It is like saying "you have two legs" to a one-legged person. Nobody would be happy to feel like a fool, and nobody would accept being a fool who does not distinguish between their own body normal and abnormal functioning. Moreover, by delivering this diagnosis as something not really serious, not really meaningful, they make us feel guilty before our families, whose life we affect very seriously with our disability. I wonder, what kind of person would easily accept this? This is simply cruel, we do not deserve to be treated as if we are some kind of sinners who do not want to accept their sin. I personally do not understand neurologists' unexplainable hatred towards functional patients (just can not find another word). If they are OK telling a cluster headache patient that the mechanisms of cluster headache are poorly understood, why can not we be told the same thing instead of BS we are told? And, honestly, how many organic patients (say, people with MS) would benefit from CBT and other therapies - I am more than sure, the percentage would even exceed that for FND patients. Just because all sick people are psychologically vulnerable, and FND patients, unlike "organic" patients, often have to suppress their feelings in order to be taken seriously by others. I do not know any other specialty in the medicine where functional symptoms would be treated with such a disdain - cardiologists treat people with functional cardiac symptoms just fine, as well as gastroenterologists treat those with IBS, as well as gynecologists treat women with pelvic pain. Nobody says to them "Farewell, go see a psychiatrist and do not come back". I feel like neurology must really stop playing God Almighty and come back to earth.
Hey there, thanks for the response! It wasn't until after I'd written the email that I realised who Dr Stone was, doh! I've since been reading through some of the medical papers concerning the advancements in FND. I don't really expect a response to my email but I felt compelled to write it all the same. He's probably extremely busy and an email from yet another 'FND' patient isn't going to be top priority :).
Thank you for all the support you express in your comment, some of the points you make are so true and yet if you try to express these to any Dr they would probably label you with some other condition that has a 'need to find an illness'. Honestly it's ridiculous yet they are more concerned with their own integrity in diagnosis than entertaining that they could actually be wrong.
I have to slightly disagree on your last point though. The reason my Endometriosis took four years to diagnose is because it didn't show up on scans and various Drs would not believe it was 'organic'. I already had PCOS and yet not one of the doctors looked at the symptoms properly (until google linked straight to the Endometriosis charity site!!). I was in crippling abdominal pain, couldn't eat and eventually lost my job because I was house bound. I've never experience pain like it, nor do I hope to again! But, with it not showing on scans I was told it was 'anxiety' and farmed onto any number of anti-depressants. I was upset because of the pain, not the other way round! Yet they wouldn't have it and told me I was only making it worse for myself. I did the CBT courses like I was told to and still no help. I tried everything they threw at me (god knows what effect that will have on my body anyway) but why wouldn't believe it was anything 'organic'. In 2011 I finally found a proper consultant specialist and there was scar tissue wrapped around the bowel and other places gluing the organs together and Endometriosis was everywhere. Just show's that even a gastroentorological professor can't even put two and two together. I don't understand the approach of 'we don't know, stick her on anti-depressants', but it's sickening. Sadly I assume this happens to many of us and it just goes to show how much the people we place trust in really know.
OMG, what a terrible story! I can see that my own experience with OBGYNs was misleading, then. I never had any bothering symptoms, yet my testing was not "clean" enough for them, and they kept treating me with antibiotics until I just stopped seeing them. Then, I was endlessly told I had elevated cholesterol, while I am a slim person of only 40. I simply can not see a point - how come one doctor can be concerned about some real "nothing" like a test slightly differing from the median of the whole population, while another doctor can grin at you and tell you that a disability seen from a kilometer-long distance by anybody is "nothing".
All we can do is hope that we either get to see a good consultant or that the patient has enough intelligence to investigate illness wisely and has the energy to push for an answer. After all, not all those who use the Internet set out with a determination to diagnose themselves.
The problem is that the more consultants we see and the more "professionally" we sound after digging into the anatomy and physiology, the more they are convinced we are out of our mind. In my case, the situation is even more complicated than that of an average FND patient, as I obviously do not have a typical clinical picture for FND, either. So, I can not make up my mind on which consultant to see and what part of neuroscience to investigate. The only existing FND expert in my city simply sent me home with nothing to offer. My opinion is that, able or unable to help, neurologists 1) must show all the sick people an equal amount of respect and 2) be ready to professionally help FND patients with the informational search, advocate group search, prescriptions of all available treatments (pain medication, physical therapy etc.), disability applications, if needed - instead of bullying them and leaving them on their own.
Hi everyone, it's obvious that we can all agree fnd patients get a rough deal when having to deal with our diagnosis. I've found the neurosymtoms website helpful and informative to help me understand my symptoms, however I'm just as frustrated when it comes to a diagnosis which is not recognised or gives no prognosis.
Like MS suffererers our symtoms are also worsended by stress factors, theres nothing more stressfull than knowing your sick pay is going to stop because your suffering a condition not an illness, that your gp or neurologist are unable to give a time scale as to when you will be better, if you'll ever get better. I HOPE for all our sakes that we do, or that we find ways to make the best out of what each day brings. However what really gets to me is that we have to accept the diagnosis we are given, without doubt so we can get better, what about others in the medical profession/government, that don't except the condition so how can they expect us to. Have any of you had problems getting sickpay or help,any advice?
I have a great GP who is very sympathetic, when I explained to him that the neurologist made me feel like I'd wasted his time. He explained that when a neurologist can't find an illness through all there tests, theres nothing more they can do because they don't know what to do, so we're back to square one.
i think its positive that Dr Stones says its not all in our head, that our symptoms are real and there is a need for more studies in this area, however we need more that just one Neurologist who is interested in finding out why so many people suffer in this way.
I was interested to read the article about molars. I have tried acupuncture in my ear with a special kind of neurological light therapy. It helped with the pain and he found out that I had a elongated molar. Alot of my pain has disappeared since it has been removed, Before it was removed my right arm hung 10cm lower that my left. I now have just a difference of a 3 cm, So there is obviously something in this article. However, my weakness has not disappeared or my other symptoms.
I have also been on mindfuldness course, which I also felt helpful, helps me deal with pain and aknowledging how my body feels from day to day and accepting thats how it is and i can't change it just by hoping or worrýing about it. Doesn't mean that I don't do both. And I can also get down.
I have also been going to fysio and joined the local gym because that should help me regain the strength in my righthand side, but not much progress, I can increase the weights some weeks and then the next week I'm back to square one. But exercise in any shape or form is good for the brain and helps against depression so they say.
Some of you write about CBT course whats that? Have any of you tried the things i have tried?
I am now starting a diary of my symptoms, what happens when, how I feel, what i've been doing and how my body reacts. Maybe this will help me see some kind of pattern or at least I will be able to remember all the things that happen to me. Plus I can see back on good days to.
Well thats my two pennys worth for today, take care all of you
I am truly very much surprised at how such a "common" condition (which they call it everywhere, including Dr. Stone's website) can not be acknowledged by disability services. If it is so "common" they must know it can cause a great deal of disability. Yet it is impossible to get any disability benefits (at least, in my country). I was laughed at my face by doctors when I mentioned that I would possibly (only possibly!) need it. I was told "Oh, you should not think about disablity, it would be demoralizing and harmful for you, you should work, socialize and live a normal life". As if I did not work and live as much an active life as possible already, only it was very far from a normal life. To say nothing of that I have no doctor caring for me and no treatment, accordingly - as nobody of tens of doctors I saw expressed any willingness to deal with my case.
Thanks everyone. Says exactly what I feel. Yet, there are the odd, side-ways glimmers of hope. I had a spinal for suprapubic catheter recently. In the midst of surgery, the spinal stopped working at place where surgery was being done. And I had a brilliant anesthetist who was prepared for this possiblity, because it sometimes happens in neuological patients. (Drug allergies means this was definately advanced prep). It was brilliant to be treated as what we are neuo patients, not pretend ones. Gives me hope. Maybe the change in attitude will have to come from outside the field.
The CBT program is a self help workbook "overcoming functional symptoms' its goal is to teach you how to learn to live with functional symptoms and then they may go away. It has a 13% success rate. A book more about coping rather than curing. Written by Dr. Stones Colleague Michael Sharpe , you may want to read a problematic prognosis of functional mv
The book can be bought on amazon. It is set up that you read a short story then answer questions. For Example:
Joe Smith hurts his shoulder and thorough exam the doctor determines it is fine and no xray needed. This concerns Joe because he is sure it is more than that. He makes a homemade sling and his wife begins to help him dress because it is too painful to move. Joe takes the week off work because he is sure there is more wrong and doesn't want to hurt it more. After another visit by a different doctor the diagnosis is the same. It has been several weeks and it seems the pain is getting worse now that he thinks about it. Joe is frustrated it has taken almost 3 months and is not better off. In fact he can visible see his hurt shoulder is loosing muscle tone. He will have his wife help him ice it tonight.
questions:
what triggered the pain
what behavior led to the missed days work
what should Joe do now
what was the real problem
what could Joe do differently next time
What is Joe's wife's part in this
story and questions not from actual book but based on a similar scenario
it has a 5 area of approach. cant remember all of them though. This is sort of the common theme of all the stories.
there are other books for reading that others have mentioned but they are not self help they are more stories. The Author of my own misfortune by Angela Kennedy is also a popular book.
hi MEDSOPH . you may find DR STONE will get back to you . I have emailed him a few times. I am not a patient of his , but he is the only consultant whom has ever responded
Hi Medsoph, i also emailed him and he responded within a couple of hours. Just watched his presentation on youtube.
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