You think ME is bad - try having a "Psychogenic movement disorder"!

[Woolie]

Great find, @Cheshire.

 

[Jeckylberry]

@Cheshire, I was very interested in the paper you posted on dystonia. I read at the end:

It is important
therefore to consider whether the patient might be presenting
with an unusual secondary form of dystonia, and therefore (lim-
ited) investigations are often appropriate. However, a careful,
open-minded approach to diagnosis (which includes the consid-
eration of functional overlay over an organic dystonia) should
not be allowed to cause diagnostic paralysis where more and
more tests are requested to rule out increasingly unlikely
organic causes. This is where the search for positive clinical
signs is of such diagnostic importance.

I would like to know why arriving at a diagnosis is more important that looking under every rock for a real answer. In my experience getting the diagnosis stops all further investigation. They devalue the importance of searching by labelling the process as "diagnostic paralysis". After 3 years of misdiagnosis, I would far rather still be in the inquiry rather than fighting a certainty. Unlike these researchers suggest, diagnoses are set in stone.

There will always be patients where diagnosis is difficult, and
though the physician suspects the diagnosis to be that of FD,
the level of certainty is not high. Perhaps because of the feeling
that it is worse to diagnose a patient with an organic movement
disorder as having a functional disorder than vice versa, it is our
experience that such patients are often left to drift without a
suitable management plan. However, in such cases, an honest
discussion with the patient of the diagnostic possibilities, the
presentation of the diagnosis of FD as a real diagnosis with a
particular avenue of treatment associated with it, enrollment of
the patient in a true rehabilitation approach to symptoms with
both physical and suitable cognitive treatments, and a willing-
ness to reconsider the diagnosis over time should new symp-
toms emerge can be successful.

I don't get it. Just tell them that you don't know or that it is probably dystonia. Don't hang that sword of Damocles over their head. Why try to "enrol" them in the idea of them having FND? Life is already hard enough. Treat them for the organic illness until such times as the treatment is obviously not working. If it does work then, why was it necessary to suggest it might be psycogenic anyway? So much pain could be avoided!

 

[chipmunk1]

I just don’t understand how people who are supposed to have studied psychology during years can come with such a poor, and hurtful model.

You assume that they have studied psychology. I found that when it comes to somatisation, conversion disorders, psychologists really aren't that guilty These theories are based mostly on medical research(if you can call that research). Some of the worst psychobabblers aren't even psychiatrists but neurologists who have no formal training in psychology. Conversion disorders are largely based on freudian theory which the field of psychology tries to distance itself from.

 

[chipmunk1]

I would like to know why arriving at a diagnosis is more important that looking under every rock for a real answer

I would say:

Money,time,resources,ego. Medically unexplained illnesses are viewed as "low yield" cases.

Even extensive testing is unlikely to be fruitful. Somatizing patients are viewed as taking away resources from others who need them more than they do. Since they don't have any known pathology, things can not be as bad as in the person with obvious pathology. Patients with genuine illness deserve medical attention more than the somatizers.

Somatizers use up too many resources.

http://www.aafp.org/afp/2000/0215/p1073.html

In addition, somatizing patients use inordinate amounts of health care resources. One study4estimated that patients with somatization disorder (the most severe form of the condition) generated medical costs nine times greater than those of the average medical patient. Despite substantial amounts of medical attention, somatizing patients report high levels of disability and suffering.5Finally, physicians report that somatizing patients are frustrating to treat.6Physicians lack a sense of effectiveness when multiple complaints do not fit into usual diagnostic categories or patients do not fit into a typical office schedule.

The primary care physician's emotional response to a patient can serve as an early cue to pursue a somatization diagnosis. A feeling of frustration or anger at the number and complexity of symptoms and the time required to evaluate them in an apparently well person, or a sense of being overwhelmed by a patient who has had numerous evaluations by other physicians, may be a signal to the clinician to consider somatization in the differential diagnosis early in the patient's evaluation.

Then being unable to diagnose and treat can be a really humiliating experience for the doctor. They don't like it when you make them feel incompetent.

In a hospital setting there is pressure to diagnose. You can't say: I don't know. You don't have time to run hundreds of tests when many other sick patients who can be diagnosed and treated, are waiting.

Then some believe that psychogenic illness reinforces itself. The sooner you treat it the better the prognosis. The more lab tests you order the more you reinforce the false illness belief.

When a family system is under stress, identifying one person as a patient may provide a focus that stabilizes the family system and alleviates feelings of anxiety within the family. Members know how to interact with each other in the context of the illness. The patterns of behavior may become recurrent, and family rules about how each member should act are formed. The patterns may become dysfunctional when one member takes on the role of being weak and defective. The physician may reinforce this troublesome dynamic by focusing medical attention on the somatizing patient's disability and illness. The family system often has a powerful tendency to resist change, even though changes, such as the improved health or function of the identified patient, may be desired.

 

[Valentijn]

And yes, there is part of me that keeps asking - am I just being a hypochondriac? Am I over-exaggerating tiny symptoms and causing my condition? Is that why noone can find anything... etc etc... It's so easy to ask that because that is what they are asking.

I think this is a problem that a lot of us have ... that little voice that whispers, "what if they're right?" Part of dealing with that self-doubt is experience. I know they're wrong because I've had five years of symptoms which completely contradict their explanations. The so-called "anxiety" symptoms only hit when upright - you'd have to be daft to think that's psychosomatic. Instead of being weaker after bed-rest forced by weeks of intense orthostatic intolerance flares, I'm stronger for being rested - that flies in the face of any deconditioning hypothesis. When I turned blue due to blood pressure problems, I was either asleep or nearly so ... certainly not causing any symptoms due to wrong-thinking while I was basically unconscious!

There are so many holes in psychosomatic theories that they're a joke unto themselves, even if you ignore the complete lack of scientific support for those theories, and the wealth of support for the opposing biological theories. Psychosomatic research and practice is so far removed from science that it's probably better suited to being a philosophical subject than a scientific one.

And regarding the self-doubt ... that's their goal. Their purpose is not to present evidence of the various possibilities, but rather to convince us that they are right. They have spent a lot of time figuring out how to do that in various contexts, and apply them quite ruthlessly upon ME patients. One example that really puts it into perspective is the ME patient who was so sick that he had to be hospitalized, yet kept insisting he was not ill. He basically had to be deprogrammed to deal with the intensity of his illness-denial which had been created by the warped CBT therapy used upon ME patients in England.

The FND practitioners have been trying to brainwash you. They have been trying to convince you of things which completely contradict reality. They have probably used various methods to help with this - maybe a team of practitioners (neurologist, psychologist, physiotherapist, etc) to reinforce the same message. They have offered you a brilliant reward if you believe in them, with the promise of a cure. They have cynically manipulated you to get their desired outcome, without thought for the damage that can do if they are wrong, and without any respect for your understanding of your own body or your dignity as a human being.

It's a sort of medical abuse, and it's pretty horrific. What might help, if the doubts persist, is seeing a psychologist who is willing to help you address the effects of that abuse. Just be careful to steer clear of any psychologists who believe in psychosomatic disorders. It can help to ask for recommendations of specific practitioners from other patients who have faced similar problems.

 

[Woolie]

@chipmunk1, thanks for this material on dystonia, very interesting!

 

[Woolie]

"Once I got brain surgery to correct the epilepsy disorder I had, I began having conversion disorder but didn't ACTUALLY get diagnosed until three years later; this year."

@chipmunk1, this is actually not uncommon. There's a sizeable number of people who acquire "psychogenic" seizures after surgery for epilepsy. This article reports on it.

They explanation they give - and get this - is that there is a period of "psychiatric vulnerability" following the surgery, which brings on the psychogenic symptoms.

I know, right?

 

[chipmunk1]

@chipmunk1, this is actually not uncommon. There's a sizeable number of people who acquire "psychogenic" seizures after surgery for epilepsy. This article reports on it.

They explanation they give - and get this - is that there is a period of "psychiatric vulnerability" following the surgery, which brings on the psychogenic symptoms.

I know, right?

I didn't know this but the paper is a real "gem".

Other patients with histories of more serious psychiatric, intellectual, and medical problems from early life may develop NESs at a time more remote from surgery. These patients’ instrumental problem-solving and coping abilities are presumed to be compromised, so they may develop NESs as a way to avoid or escape from the challenge of performance demands of new role expectations that they cannot fulfill despite remission of seizures.

OMG.

 

[A.B.]

ther patients with histories of more serious psychiatric, intellectual, and medical problems from early life may develop NESs at a time more remote from surgery. These patients’ instrumental problem-solving and coping abilities are presumed to be compromised, so they may develop NESs as a way to avoid or escape from the challenge of performance demands of new role expectations that they cannot fulfill despite remission of seizures.

Some of these "mental health" experts should be institutionalised, not let loose on patients.

 

[chipmunk1]

Some of these "mental health" experts should be institutionalised, not let loose on patients.

In a certain way this is close to insanity. A former epilepsy patient became seizure free thanks to surgery but is still having seizures because they could not cope with the fact that they didn't have seizures.

Other claims:

Various reasons have been advanced to account for the disproportionate number of female subjects with somatoform disorders. It has been suggested that gender-determined sociocultural patterns may favor expression of emotional distress through abnormal illness behavior in females

Right-hemisphere neurologic dysfunction also was found to be more common in patients with NESs after surgery. This finding is consistent with other reports suggesting greater co-occurrence of NESs and epileptic seizures in patients with right hemisphere dysfunction (28). Right hemisphere-damaged patients are known to have difficulties perceiving and assessing emotional cues (29). Consequently, these patients may be more likely to misperceive or misinterpret their postsurgical emotional instability and to misattribute the psychiatric symptoms to the already familiar experience of seizures, thereby leading to NESs after epilepsy surger

So there is neurological dysfunction but it is still purely emotional?

 

[ScottTriGuy]

Beware sociopaths with advanced degrees and god complexes.

 

[chipmunk1]

Beware sociopaths with advanced degrees and god complexes.

the frightening thing about all this is that you can assume that what they actually believe is probably far worse than what they write.

This is probably a politically correct, partially censored version of what they actually really think.

 

[Jeckylberry]

This stuff is sickening! It's just awful! The stuff about NES being caused because
their seizures are cured is nuts! Hats off to you folks for the steely nerves you must have to read this stuff and not tear yourselves apart! Just looking at it in truncated form gets me so steamed up!

I've learnt so much. It's helping me see through all the BS. It's so much deeper than I realised. I think I prefer the first neuro I saw who said she couldn't help me as my problem wasn't neurological!

Thanks for naming it up as "medical abuse", @Valentijn. It feels like it: manipulation as they infer I am doing myself a disservice by not believing in the team - yes, you got it, a neuro, physio and psychologist. Apparently they are brilliant and I must be crazy to not jump at the opportunity to work with them. Surely I would get better under their care than continue to look on my own and further ruin my chances of recovery. Thing is it was taking all my energy to get into the city for half an hour with a physio who asks me how I'm going then gives me more exercises. She's never even seen me walk. Sigh. It's so pathetic. Last time I saw the psych she commented that my voice seemed different. I said, yes, it's always like this when I over exert myself. Then, after an hour of talking in her quiet room she noticed my voice had improved and said, "you're sounding better now you've got that off your chest." Double sigh.

 

[chipmunk1]

one of the worst(or perhaps the worst of all) examples of conversion disorder psychobabble can be found earlier in this thread.

http://forums.phoenixrising.me/inde...ic-movement-disorder.35315/page-2#post-554000

Even when they can't deny a misdiagnosis of prion disease, some psychobabblers will continue to highlight the emotional disturbances of the patient and continue with their psychoanalysis.

It seems they are never wrong and even in prion disease psychotherapy was the right thing to do because there was an invisble functional overlay contributing to the symptom presentation.

After the death of the patient they would even try to accuse the patient of delaying their proper diagnosis because of "emotional conflicts" contributing to a confusing symptom presentation.

One of the leading ME psychobabblers would even link to that paper claiming that a dual "Mind/Body" diagnosis would be important.

 

[Woolie]

Just looking at it in truncated form gets me so steamed up!

I used to find it really distressing too. But you do grow a thicker skin. And I now try to concentrate on what can be done, which helps a bit.

 

[Kyla]

Hi @Jeckylberry you might be interested in this new paper which is a rebuttal of 'psychogenic' explanations for neurological movement disorders:
http://www.researchgate.net/publica...physical_illness_Time_to_examine_the_evidence

thread on it here:
http://forums.phoenixrising.me/inde...l-illness-time-to-examine-the-evidence.41553/

 

[Jeckylberry]

Thanks for the support @Kyla. I have recently read this paper as it was recommended by someone else on the forum. It's very pertinent to me and I wish there were more like it challenging the bad science of making assumptions about a persons responses to an illness.

 

[Mithriel]

I have come late to this thread but have found it very interesting. One neurologist told me I had a psychologically induced movement disorder, after I spent a week in a neurology ward being treated appallingly (and which left me feeling traumatized). Later his registrar went as far as a doctor can to apologise for how I had been treated, muttered about atypical MS and suggested I not come back to neurology.

I became ill in 1968 when I took a summer flu. I was diagnosed with ME before CFS was invented and have all the classic symptoms such as sudden onset and high titres to Coxsackie B3 and B4 but my symptoms have always been mainly neurological with episodes of paralysis, lack of speech and, as a teenager, absence seizures. I could not stand still for any length of time, it was easier to walk than to wait for a bus, and I have the classic ME response to exercise of being able to lift a heavy bag once, but not a spoon to my lips over and over.

I became very disabled in my thirties, the technical terms would be kinesogenic and non-kinesogenic paroxysmal dyskinesia with dystonia and also periods of blindness that were most likely MS (I have acquired autoimmune diseases over the years such as psoriasis, frontal fibrosing alopecia and sjorgens syndrome, my immune system is really shot) I have been going to hyperbaric oxygen treatment since then which has stopped a deterioration and baclofen controls the movements enough to allow me to feed myself and not give my husband too many black eyes

Over the years I have come across a few people with ME who have developed paroxysmal dyskinesia and I became friendly with an MS patient who had it. She was told that there is a genetic propensity and her doctor felt that a person at risk will develop it if they get another neurological disease.

I have read widely over the years and came across some interesting things but I cannot really give references, sorry. One paper about eyes was quite jargon dense but I think what he was saying is that nerve signals travel from the eyes to the brain but if the nerve is damaged the growth factor which begins healing lets signals travel back up the nerve as well. Also read that damaged nerves can regrow with lots of smaller weaker nerves (imagine the arm with the fingers at the end) This magnifies pain signals but could apply to other things as well.

All this leads me to believe that what is happening to me is that the virus is damaging my nerves but when they heal the signal is no longer "pure" and I get a wobble that gets worse the more I repeat an action. Years of this has led to all the connections being loose so that the signals get screwed up.

I am sure that mitochondrial damage is at the root of all our problems and the biochemistry of that is going forward
in leaps and bounds so hope exists even after all these years. My GP treats me symptomatically and I ask no questions because I do not want to know what he thinks is causing my problems.

As for psychogenic illness!!! The "pseudocoma" really did it for me - if your eyes roll the wrong way then it is psychological!!!

Blood clotting takes something like 12 steps, each genetically controlled and a recent New Scientist headline read "Blood clotting - not as simple as we believed" yet we are asked to accept that an organ as massively complex as the brain can only go physically wrong in a few ways and the rest is to fill an emotional need. I wonder if they listen to themselves.

Any claim that a treatment will only work if you believe in it is not scientific whether you are a homeopath, a faith healer or a neurologist. I have never been able to work out what I was expected to do when they said I had no physical need to be in a wheelchair. Should I have said "thank you doctor" and got up and walked out? Not even a laying on of hands!

I have lived long enough that I have seen scientific certainties come and go. Do not let them make you doubt yourself - or label you.

love Mithriel

 

[alex3619]

Any claim that a treatment will only work if you believe in it is not scientific whether you are a homeopath, a faith healer or a neurologist.

At best I think psychogenic medicine needs to be relegated to alternative medicine. I also think it needs a name change. Maybe something like Institutionally Approved Psychoquackery. Or just psychoquackery.

 

[Jeckylberry]

I agree! As @Valentijn says, it is philosophical at best. I'm wondering if it's all a backlash against active participation by a new age of informed patients putting the threateners on medicos who respond by retreating further into the fog. It sounds reasonable when you first hear it but soon it reveals itself to be nothing but smoke and mirrors designed to keep distance between them and the laity and to preserve their elevated status. They go to a lot of trouble. We should be looking at them and seeing hysteria and functional overlay! I bet we'd find it just as easily.