New HP - Conversion Disorder

[Lulu54]

We have had many discussions about the CD diagnosis that some here have heard from their neurologist.  This pops up often enough, that we recruited Silkcut (Sammy) to write a new Health Page on this topic:

So they think you’ve got conversion disorder?

- the informed patient’s perspective
  

Due to MH's limitations on  length, I had to break this HP into two parts.  Be sure to read Part 1 and Part 2. Yes, this is lengthy, but it is a scholarly look at CD in the context of dismissing patients.  

I often welcome new members here with a line about this being a very smart group of people, always willing to share their knowledge and compassion with others.  This is just another fine example of that.  

THANKS SAMMY - this is a brilliant piece and all neuros who dare to utter conversion disorder should be required to read your words.  

be well, Lulu

[Lulu54]

Bump for Q and anyone else out there interested in pondering this problem.  

BTW  - I spoke with Julie -sarahsmom - today and the CD discussion came up again in her treatment.   She'll explain it all when she gets back  but someone had listed the reason for her being in the med rehab center as "malaise and fatigue."  If that doesn't make you furious, I don't know what would.

-Lu

[silkcut]

Yes, Lulu...it's close to her heart, I understand.

So, masses and masses of best wishes to Quix...Get Well Soon!!!
sammxxx

[Lulu54]

I do so wish that Quix were feeling better because this is the type of discussion that would really get her juices flowing.

- L

[sllowe]

This is an excellent discussion and I look forward to reading the HP!

Good job Ladies!!!

-shell

[supermum_ms]

I have read it, could not stop feeling put out though, and i have to admitt the feeling that CD is as wrong as what was once believed to cause Autism. You know the widely held belief that Autism was caused by Fridget mothers, which couldnt of been more wrong and more damaging.

I've had a personal interest in the topic, what i dont understand is when the person before you has abnormally ice cold and purple limbs, one leg from just above my knee to my toes and the other one a purple foot, visible muscle spasms, on top of everything else and still the idea is stress. I know why stress, i have a family all dx with mental health issues and or Asperger's, and i worked as a disability support worker.

What they dont seem to understand is that to me they are more normal then 'normal', i grew up in that world and dont feel stressed by my family, in fact i'm so proud of them i'm more often inspired. I dont even have physical indications of stress, no stomache issues, headaches or even hypertention or Gerd. What the neuro-psych said to me was that "stress presents its self in different ways" i had to point out because i couldnt help myself, that the type of stress he was alluding to would be exstremely unusual if it first presents its self as neurological. He had to agree because its true!

He also tried to tell me that me getting an infection prior to my last episode, could be how i am manifesting stress. So with his logic, i get the flu or viral infections just like other people in my neibourhood do because i'm stressed, not that every one on the planet is stressed, no, i think it only relates to me lol. Its poppycoock and i think he should of been feeling as stupid as the look on my face said he was.

I would love love love to find something on the preverlance of convergence in the optomistic person, i'm sure you wouldnt find any, it defies logic to be optomistic but at the same time being so affected by 'worry' that you could have such a phychological condition. My family laughed so much when i told them the neuro said it could be senile dementia and or psychological, one of their long standing complaints about me is that i'm so laid back nothing fazes me. The more they flap the calmer i get, still love to know how they get stressed out of someone like me.ROFL!!

As they say downn under "she'll be right mate!"

Cheers..........JJ  

[silkcut]

Hi supermum

Many thanks for your very pertinent comments.

I am so sorry you've had to suffer this too on top of your physical problems. It makes me both very sad and very angry.

The snippet you quote illustrates exactly one of the major points I seek to get across in the Health Pages. There is so much confusion because there are NO credible scientifically robust bases for this 'condition'. None at all.

Like you, I was shocked as I researched and read about all the neuro tests that we patients are led to believe are valid physical tests but are really only ways to 'catch us out'.

Similarly, neuro-psych tests are interpreted in any way that suits the doctor's judgement. They are testing 'functional' capability, not actual capacity. Watch out for all those weasel words! 'Functional' is often used to mean 'some sort of conversion of psychological problems to physical sx'.

Your experience with the warring CD-diagnosers and the psychiatrists who find no evidence of CD seems to be common. We patients get stuck in the middle.

AH! The big misdiagnosis scam! 'Only 4% are misdiagnosed'. This is another fiction. It's illustrative of the famous computing acronym GIGO: garbage in, garbage out.

This is how it works - as I think you've found. If you do not formally give a patient a diagnosis of conversion disorder, then that patient simply does not appear in any statistics related to psychological disorders. If you only formally diagnose with CD the very few patients who are a) very extremely affected by 'something' and b) too weak/powerless/lacking ability to argue then your data input and output will indeed look as good as 'only 4%'.

E.g. one of my neighbours, a very meek and minimally educated man, was being dismissed time and time again with a minor case of 'stress'; no need to put that down as 'conversion disorder'. Six months later he was dead from the cancer that the GP refused and refused him even minimal exploratory tests for. This GP is known for ignoring patients' physical sx and signs - his casebook is littered with similar debacles and tragedies. The only conversion is in his mind!!

My contention is that many, many people are not formally dx'd with CD. Their doctors simply leap to an assumption of 'something psychological' almost from the off and then keep on fudging the issue - until either the patient gets very very ill or disappears. And we rarely hear about those patients who die because of this 'Covertly Diagnosed Conversion Disorder' - CD/CD! Their cases are never counted in the formal CD misdiagnosis statistics.

When scientists show me rationally and precisely, in molecular and cellular terms, how the body and brain converts psychological trauma into physical sx and signs that are not indicative of physical disease pathology then I might be able to understand and accept CD as a valid condition and diagnosis. Doctors have had 5,000 years to research this question; there are still no answers.

Did you read my paper from which these CD Health Pages are taken? There I write much more about the completely unscientific genesis of CD, its lack of robust diagnostic criteria and the clinicians' resort to statistical 'authority' - which, of course, can be shown to be very flawed.

best wishes
sammxx (hrrrmphing well this morning!)

[supermum_ms]

Hey Sammy,

To me one thing seems to be clear, if the medical fraternity can not reach an agreement regarding the classification, we dont have a hope in hell of working it out!

A snipet taken from the site i listed above, aknowledges the debate regarding this issue...

[[[[[Another difficulty in establishing a diagnosis of conversion disorder lies in the lack of consensus concerning the psychological mechanism of criterion B. This is illustrated by the different classification categories in DSM-IV and International Classification of Disease-10. In the former, conversion disorder is grouped with the somatoform disorders and has been classified as such mainly because of the presence of a symptom mimicking a medical disorder, but also because the mechanism thought to be involved is a ‘symbolic resolution of an unconscious psychological conflict’, ‘converting’ the stressor into a physical symptom.

In the latter, conversion disorder is included with the dissociative disorders, implying that the production of the symptoms is the result of ‘a complete or partial loss of the normal integration between memories of the past, awareness of identity and immediate sensations and control of bodily movement’. It also implies that a satisfactory psychological explanation can be given for the symptom, when finding an associated psychological factor, even if denied by the individual.

The debate concerning which definition is more adequate is still active,[5•] and will probably go on until 2011, when the new DSM-V and International Classification of Disease-11 classifications are due.]]]]]]

Within the 8 pages is a section on what tests the neurologist is using to determine 'real' neurological issues from the phychological, i found that eye opening. These tests, are being used as CLINICAL EVIDENCE of CD, some we will all recognise, i was a little shocked.

From my personal perspective, i was walking like a bouncing string puppet, (bent knee's, clonus, heavy footed, with the additional of intention tremor in my left leg) and i assure you it was not by choice. I could stand straight (though i couldn't stop bouncing or tremoring) but to walk the muscles from my butt to ankles would not let me straighten the legs, unless i moved in slow motion lol. Thigh muscle stength very was weak and rear muscles tight (spastic ?), and my wonky knees didnt help the walking process.

If i am interpreting this neurological diagnostic view correctly, my bent knees could of been a red flag, though i'm not sure if all the other things negated or complicated the validity of what i experienced. It still made me feel upset when i read walking with bent knee's was seen as a clinical sign of CD. I still have many unanswered question, but my blood boiled when my neuro ignored the clinical signs of neurological damage that he found, when his incorrectly ordered MRI didnt light up, he became dismissive. In one breath he said my cognitive decline could be from senile dementia (this started in my late 30's) and the next that the physical issues could be psychological. What he saw on the MRI was just "irrelevant bleeds" hmmmmmmm

The neuro-psych wasnt much better, even though he had documented evidence of a cognitive decline of 30+ IQ points, he was stuck on interpreting this as psychological. The psych who assessed my mental health condition, could not find any evidence of me ever having anxiety, depression, health anxiety or CD, they ended up in an argument because her evidence didnt support his theory. In the end the neuro-psych speculated that it could be vascular but he still prefered psychological and thats with no evidence to support. grrrrrr No one has been game to mention CD to me, though stress, emotion and anxiety popped up a lot when i talked to the neuro-psych, so i knew the direction it was heading. Grrrrrrr    

I was also interested in a one liner, regarding the preverlence of misdiagnosis which has long been regarded to be approximately 1/3 of dx CD are misdiagnosed. It states "A thorough meta-analysis,[4] however, recently established that misdiagnosis rates are around 4% in conversion disorder – no more frequent than in diseases such as schizophrenia or motor neurone disease." This 4% needs to be investigated further, alone with out review this figure will give neurologist more confidence when they form the speculative opinion of CD, that they will be right 96 times out of every 100.

Personally, i think your HP is good! I also think when the psychological card gets played its really hard to fight, i knew it was wrong but still I needed evidence, which i have but what do you do when you have the evidence and they still dont want to help you?!

Cheers.......JJ

[silkcut]

Thank you, supermum_ms, for that link. I shall read it with much interest (and with my critical analysis hat on firmly!). What's your opinion of the issues raised here and e.g. in the paper you link to?

Wind_and_Water, I think you make some excellent points. You highlight, as Lulu does, that there are deeper political issues that need to be taken into account. Your report of the politics and egos behind DID and CD dxes is very revealing. Thank you for that.

I so thoroughly agree, every patient who presents with physical sx needs to be examined in that light first, with all physical disease ruled out before going to 'psychosomatic'. But note that the CD dx can be applied BEFORE such signs and symptoms are ruled out. It can even be applied despite physical signs and symptoms.

johnnymutt, many thanks for your kind wishes and I'm so glad you have something else in your armoury! I believe that the scale of employment of this dx is far too large.

Which brings me to Lulu's clarifications and thoughts - yes, I believe you're spot on! Neuro diseases are expensive generally. Healthcare providers are indeed very actively seeking to reduce costs, now more than ever. All the available evidence points to strategies that insist that clinicians reduce use of resources. The BMA and other reputable organisations have provided evidence to show that clinicians are even bullied to fall into line.

Thus we hear of many painful and exhausting cases like sarahsmom, who had to line up her 'evidence' for a proper diagnosis and proper treatment. Hey! This is healthcare - NOT a court of law...when you're ill, you shouldn't have to 'prove your case'! And yet that's what so many of us feel and are forced to do.

In the UK especially, where healthcare is a 'closed shop' and alternatives are expensively prohibitive for most people, second opinions (i.e. obtained from outside the NHS system) are often ignored: this is perfectly legal. Equally, one's attempts to seek such are written off as...wait for it...'evidence of abnormal illness behaviour and of the patient's hypochondria' - symptoms of CD!!  There's that 'clinicians' judgement' thing again...

When you're ill, fighting quasi-legal battles for decent treatment is the last thing you need or want to be doing. You just need doctors who listen with your best interests at the forefront and provide timely, appropriate investigations and decent treatment. My thesis is that imposing a blanket assumption of a very unfounded, unscientific CD on people is just not decent treatment - nor, I imagine, is it treatment that the clinicians themselves would accept.

best wishes to all
sammyxx

[silkcut]

Thank you for your kind words and very pertinent appraisal of the issue, Biowham.

I was thoroughly shocked as I was researching for this piece. Like you, I had no idea that there is no scientific method and science behind this 'condition' and diagnosis - just a powerful bunch of historical (I'm tempted to write 'hysterical'!) authority and very poor statistics.

Have you read the extended paper I wrote, from which this abstract is taken? I cover the  development of this dx over many millennia. I am still shocked as I think about it.

The diagnostic criteria give that it is all down to the 'judgement' of the clinician. Moreover, s/he is allowed to dismiss physical sx.

As you so rightly say, this CD dx is significant for all the reasons you give (and I'd personally question whether this dx is accurate anytime simply on the basis of physics). I've also read more about e.g. Clinically Isolated Syndrome (some studies say that as many as c 80% of patients develop e.g. MS) and other sub-clinical manifestations of disease that are first dx'd as CD.  I believe the numbers of misdiagnosed CD cases are far higher than published.To dismiss so many people's (mainly women's) suffering in such a way could almost be described as a cruel con.

We need to be vigilant and to trust what our bodies are telling us.

Best wishes
sammyxx

[biowham]

Sammy...thanks for putting together those very well written pages. The issue most of us face here isn't dissociative vs conversion but simply that doctors tell patients often that they're converting, and your pages address the background of the development of this fallback and the lack of an evidentiary basis for its use. While I know from the literature (data) and from this board (anecdote) that an inordinate number of patients with physical disease are told before a later accurate diagnosis that it's in their minds, that they are converting, I did not realize how very little basis there is for an assumption of conversion *at all*. You've done a great job, and anyone who ends up here with a story of being told "CD" should immediately be referred to your pages.

It's important for everyone to realize that a diagnosis of CD is significant, whether it's accurate or not, and that there is a workup specific to it that any doctor who truly believes the patient is converting should be using. Red flags when you hear "CD" include hearing it and not being offered anything in the way of follow-up or evaluation for it. What decent doctor who genuinely thought a patient's stress was severe enough for conversion would simply say, "You're converting" and send them packing? If a doctor does that to you, they're blowing you off. What they're saying is something they don't genuinely believe.

Bio

[Wind_and_Water]

Thank you for your response, Sam.  Much appreciated.  I wholeheartedly agree with you regarding the terrible confusion of labels -- and the obstacles this creates for patients.  It is a gigantic mess.

Lulu, I appreciate your thoughts, as well.  I do understand the purpose of this health page.  I believe my comments are directly relevant.  Someone who has indeed been diagnosed with DID (or any Dissociative disorder) should not be treated as though they are also a CD patient.

DID does not equal CD.  Nor does it even imply CD.  DID patients who present with physical symptoms warrant a full, complete, and thorough physical examination until the physical cause of symptoms is found.  In fact, if the DID patient's psychiatrist / therapist are competent, then they will insist that all physical causes be ruled out, first, before assuming the new symptoms represent yet another psychiatric disorder.

Therefore, please understand, it is important to distinguish between Conversion disorders and Dissociative disorders;  they are not the same at all.  They are unrelated _except_ for a statistical correlation.

The whole project of labeling and grouping these disorders is distorted by a number of factors.

For example, there are ego politics (American vs International).  Dr. Richard J. Brown (the first-listed author of the article, "Should Conversion Disorder Be Reclassified as a Dissociative Disorder in DSM–V") seems to be in the "international" camp, which helps explain his lobbying to have the DSM conform more to the ICD.

But there exists a darker reason for my skepticism of Dr. Brown's encouragement to conflate Conversion disorders with Dissociative disorders.

Dr. Richard J. Brown (and others) were enlisted by The British Psychological Society to prepare a report on hypnosis and recovered memories, "The Nature of Hypnosis."  The report concludes that recovered memories of sexual childhood abuse are not trustworthy if they were recovered with the help of therapy.

One of the authors, Dr. Peter Naish, is an active member of  the "British False Memory Society" which is the British equivalent of the American group, "False Memory Syndrome Foundation."  Both these groups were founded by parents of adult children who recovered memories of sexual childhood abuse during therapy.  These parents organized with the goal of discrediting their adult children's memories as "false."  Dr. Peter Naish actively serves the interests of this British group, as the chair of its so-called "Scientific Advisory Board."

A second co-author is Dr. Michael Heap, who contemptuously ridicules the diagnosis of DID (ie, multiple personality disorder).  In his words, "Thus we have the false memory disaster, the ritual Satanic abuse conspiracy, mass abductions by extra-terrestrial beings, and the epidemic of multiple personality disorder, something to which, mercifully, British people have shown a commendable immunity, popular preference running heavily in favour of possessing just one personality at the very most."
~ http://www.mheap.com/hypnosis.html

A third co-author, Dr. David A. Oakley, wrote a book entitled, "The Highly Hypnotizable Person," in concert with Dr. Michal Heap (see directly above) and Dr. Richard J. Brown.  Dr. Oakley is also the Editor of "Contemporary Hypnosis," which is recommended by the American group, the False Memory Syndrome Foundation (whose mission is to discredit recovered memories of sexual childhood abuse).

Dr. Brown, himself, has repeatedly warned therapists (in his published articles) that memories of sexual childhood abuse are not credible if those memories are recovered during therapy.  According to Dr. Brown, if the client has always remembered episodes of sexual childhood abuse, then the memory can be trusted;  similarly, if the client is not undergoing therapy when he or she remembers an episode of sexual childhood abuse, then that memory can be trusted, too.  However, any memories that are recalled within a therapeutic situation, especially hypnosis, are untrustworthy.

In this light, I am suspicious of Dr. Brown's very motives in calling for conflating the Conversion disorders and the Dissociative disorders.  Doing so appears to only serve the interests of those who seek to discredit DID (in general) and recovered memories of sexual abuse (in particular).

Just to recap, Conversion disorders are not the same as Dissociative disorders.

If you (reading this post) have been diagnosed with DID or any Dissociative disorder, your physical symptoms warrant a full, complete, and thorough physical investigation.  Do not let a confused neurologist lead you to believe that your DID equates with Conversion.  It doesn't.

[johnnymutt]

OMG, I cannot believe that the doctors have actually used this as a Dx. What's even more scary is how much they are using it. I will stock this into my armory for usage if need be. For any and all that have actually been slapped with this Dx, I'm feeling for you, and hope you have found a new Neuro.

Thanks Sammy for taking the time to bring this subject to light, and thanks Lu for bringing it to my attention.

[Lulu54]

Greetings all,  I want to be sure that everyone understands the intent behind this HP.

Many people here have gone through significant testing for symptoms that the doctors can't easily identify.  In this process a large number of people have been told they are suffering conversion disorder, and the doctors want to discontinue looking for the physical cause of their problems.

A prime example here is sarahsmom (Julie) who wrote quite a bit about this last year.  If she had quietly accepted the CD diagnosis one neurologist labeled her with, who knows how they would now be treating her present flare (her legs stopped working), and she wouldn't be on copaxone.  It took a while to get all the evidence lined up for an MS dx, but she definitely was not a CD patient.  She was not abused as a child.  She was not displacing anxiety because her husband was in Iraq.  Or that her children were all grown and she was living on her own.  She was physically sick and the doctor was unwilling to consider anything other than CD.  It still makes me angry to write about her experience with this dx.

It appears that CD is also a common fallback for neuros in the UK who don't/won't go the extra distance looking for physical causes to very real symptoms.  One has to suspect the prevalence of this dx in the UK must be tied to the cost cutting measures of the NHS, but that is purely my own personal opinion and guess.

How many times have we told members here to go and have the psychological testing done when the doctors say their problems are mental so that possibility can be taken off the table?  Too many, in my opinion!   Why should we have to prove we are mentally sound when we are talking to doctors aboutvery real physical symptoms?

sorry about my rant here -

I hope that this adds some perspective to the need for this HP.  

be well,
Lulu

[supermum_ms]

I've just discovered this article called 'The Neuropsychiatry of Conversion Disorder' which is very detailed, it has 8 sections in total but well worth reading.

it starts here: http://www.medscape.com/viewarticle/572542

you do need to register but this site is free and always informative.

Cheers..........JJ

[Lulu54]

*bump* because I want everyone to know there is a new health page on this very important topic.  Be sure the read both part 1 and part 2.

- L

[silkcut]

Hi everyone and thanks for your kind comments and the particular points you raise. They're entirely justified!

In fact, I thought long and hard about this issue the more I researched.  

Wind and Water, I don't believe it's your mind that's confused! Actually, I think the confusions lie fairly and squarely with those who pontificate over and compile all these diagnostic criteria - as well as with the clinicians who employ the labels. This has arisen mostly from the history of these diagnostic criteria.  (The longer version from which the HPs here are taken gives more info on the background to some of this confusion. )

As I've endeavoured to show in these HPs, the whole field of what are broadly termed psychosomatic ailments is a mess and constructed with very little science involved. It's not our confusion, it's theirs!!

Here's the International Classification of Disease criteria: http://apps.who.int/classifications/apps/icd/icd10online/?gf40.htm+f44 - you'll see how wandery and repetitive it is, see classification F44 in particular: "Dissociative (conversion) disorders".

I believe there's a serious problem in all this. It concerns the useful imprecision (for healthcare providers) of, and confusions between all these labels: these seem to be of minimal benefit to the patient.

The big picture - how conversion disorder came into being as a diagnosis and is currently used - is quite shocking and very effectively blocks patients (especially women) from getting timely, appropriate diagnoses and treatment for what often turn out to be physical diseases. This was my focus (and not dissociative disorder as it's used with, for example, people who suffer chronic trauma effects).

You're right to raise this naming issue though, absolutely right! Given that, as patients, we all want and need speedy, accurate diagnoses, I believe we should be very vigilant about the way such diagnoses and labels are used  -  I suspect the misuse of 'conversion disorder' seriously harms many patients.

Perhaps together we can interest the DSM IV and ICD10 people in clarifying and simplifying!
samxx

[Lulu54]

Hi JJ -
The link took me to the pub but not the article - if you type in "Should Conversion disorder be reclassified" in the search box it will also take you to the full article.    Thanks.

I'm hoping Sammy will check in soon and take a look at this discussion.

Lu

[supermum_ms]

If you would like to read more on this topic, i would recommend this paper which is called 'Should Conversion Disorder be reclassified as a Dissociative Disorder in DSM-V' located here:

http://psy.psychiatryonline.org/content/full/48/5/369#T1

This may help with your understanding, i found it most informative :-)

Cheers....JJ

[Wind_and_Water]

I notice the health page says, "In the Diagnostic and Statistical Manual IV (DSM IV), conversion disorder is one of the somatoform disorders. In the International Classification of Diseases 10 (ICD 10), it is called ‘dissociative disorder’.

At first, I was very confused by this statement.  (My very slow brain often confuses me, these days.)

After some thought, and after rereading my old collection of articles on the spectrum of dissociative disorders, I would like to point out some important distinctions in terminology.

Perhaps, this is just a "USA vs International" difference in definitions.  So my comment is probably aimed toward the Americans on the board.

Trauma survivors, especially survivors of ritual child abuse, often experience chronic dissociation (ie, a dissociative disorder) throughout their lives.  Survivors are also prone to suffer major depression.  And major depression is often accompanied by chronic somatic pain (ie, somatic pain disorder).

But somatic pain disorder is just one type of somatoform disorder.  Conversion disorder is another type.  And there are other types, as well, and each type is very different from each other.

Moreover, it is important to remember that the term, "somatoform disorder," is not equivalent to "dissociative disorder."

I hope this was clear.  Please let me know if it's not clear, and I'll try again.  Thanks.

[Lulu54]

I had nothing to do with it other than asking her to write it and then posting it as a HP.  Sammy gets all the credit.

[rendean]

Thank you for making this important Health Page. It does pop up with way too much frequency and good solid information is exactly what people need to battle this label.

Ren