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

[chipmunk1]

And to top it all off, that happy ending! But in reality, prognosis for these guys is poor. Most people continue to suffer for rest of their lives.

For many minor problems symptoms don't last that long or the patient learns to live with them.

These are the "success stories" which then prove that the problem was indeed psychological.

Some problems can last a lifetime or worsen with time causing disability/premature death and cost society or the family hundreds of thousands or even millions.

 

[chipmunk1]

so that's why the MRI scans were normal.

Meanwhile in the real world....

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2426670/

Not sure about tears...but I had Three MRI's that showed absolutely NOTHING!...and then I had a scope...which showed that I had severe maltracking.

http://www.kneeguru.co.uk/KNEEtalk/index.php?topic=433.0

Ms. A continued to experience weakness in her lower extremities and ambulation difficulties. Her physician ordered an MRI of the brain, which was normal except for evidence of chronic sinusitis in the left maxillary sinus. An MRI of her cervical spine was also performed, and the results were found to be normal

Another MRI and EEG were performed, and again the neurology service was consulted. Ms. A had an essentially normal examination. The service noted slurred speech but felt it was functional and that no evidence of dysarthria was present.

Ms. A’s repeat MRI of the head resulted in a normal scan without evidence of ventricular enlargement or expanded sulci.

http://ajp.psychiatryonline.org/doi/pdf/10.1176/appi.ajp.159.4.528

 

[Cheshire]

p.s. I think I may have read too much Jackie when I was younger but didn't they forgot to show the receptionist looking dreamily at the neurologist?

The receptionist is Jon Stone himself, while Alan Carson plays the patient.

We need @Graham to have an adequate soundtrack for this.

 

[Graham]

Very tempting, @Cheshire ! Years ago I had trouble with my car, a Carlton: it would get up to about 30mph then struggle, especially on hills. Took it to the garage and they couldn't find anything wrong with it. So they passed it on to a specialist who diagnosed a fault in one of the computer chips. They replaced it, but the fault persisted. They couldn't find anything at all that was wrong. Eventually they discovered that the replacement chip had the same fault.

If it had had ME, the first garage would have passed it back to me and sent me on a driver's education course.

 

[Esther12]

I said I wasn' sure where to post this... it's been suggested here might be the right thread - hope it's of interested to someone:

Thought this may be of interest, but wasn't sure where to post it. Google suggested this thread.

http://www.functionalmovementdisorder.com/information/informational-podcasts/informational-podcast/

Podcast from a couple of years ago from Jon Stone and Mark Edwards on functional movement disorders. I haven't listened, because it started with Alan Carson pretending he understood the distracting controversies that cause such trouble around CFS and praising Wessely's Unity of Opposites propaganda/commentary... my deep emotional response led to an involuntary physical inability to continue listening. At least for now. May work up to it as part of a gradual rehabilitative process.

 

[Jeckylberry]

Oh... My... God! That's my neurologist!!


I feel... a little... I dunno...

 

[jadam914]

Another fine product, brought to you by the pseudoscience of psychiatry

 

[worldbackwards]

Oh... My... God! That's my neurologist!!


I feel... a little... I dunno...

Can't be said to be a shock though. Is it Carson? I hate Carson.

 

[Jeckylberry]

No, It's the one playing the neurologist!! Alex Lehn!!

It explains everything. I knew he was well into the FND scene but he's a real instigator!

 

[Jeckylberry]

The comic strips are obviously trying to get at practitioners who fob off patients with 'functional' illnesses. He is very much aware of the negative attitude towards patients with 'functional' symptoms and thinks that they should be taken seriously because, as he explained to me very sincerely, the condition is treatable. He explained it is real but so many medical specialists don't care about it. What was so confusing to me, and probably lots of others, is that he is genuinely nice. Has a great manner and is personable. He's convinced that FND is real and he is dedicated to helping people recover. He almost convinced me against my better judgement and certainly persuaded me to push on with exercises and psycho... Sorry, NEUROpsychology.

He studied in that infamous clinic in the UK that penned the neurosymptoms.org brochures that are now ubiquitous, from where much of this new campaign of awareness seems to be haemorrhaging. It's certainly filtering all around Aus thanks to kind, compassionate Alex. He gives talks everywhere trying to raise awareness and compassion.

This is soo twisted cos it's easier to think they are contemptuous of sufferers and want to just blow them off with exercise and CBT but it's not like that. It's growing into a dangerous mother who labels you with a condition you can't squeeze out of and wants to nurture you according to it. The condition is a construction based on the logic of psychoanalytical conclusions, so there is nothing in its framework that challenges it and that is its problem - which is also my problem since I am stuck inside it!

Hostile forces just read it like they've always read it - in your head. Thanks to Alex they're even more aware of it and more likely to conclude it when the symptoms aren't damned obvious.

 

[jimells]

Whereas if a bricklayers apprentice of the same age comes in with the same symptoms do they think more on the physical side?

No, a blue collar worker would be treated just as badly. Think about the stigmatization of people addicted to pain pills. Blue collar workers, men and women are a large part of this group. They must be disparaged because if they can't work then it might cost benefits, since they obviously don't live off their stock portfolio.

To get treated well by the medical machine, it helps to have money, look respectable (short hair, clean-shaven face, coat and tie), and belong to the same country club as the doctor.

 

[jimells]

... and how cool is the neurologist in strip #1, who is thinking "Oh god, here's another one of those!" even before having heard anything from the patient? Jeez, welcome to the "No s**t is given" clinic

I was fired by a family doctor before my first appointment, after my previous doctor fired me (actually we fired each other) and had me transferred to the new provider. Eventually I got the name of a nurse practitioner in the same large group practice who actually knows something about treating POTS as a real illness.

I finally had to give up going to the nurse practitioner because it is too far for me travel anymore.

 

[Woolie]

Hostile forces just read it like they've always read it - in your head. Thanks to Alex they're even more aware of it and more likely to conclude it when the symptoms aren't damned obvious.

Yes, I think this is the irony, Jeckylberry. These doc's are trying to "help", by encouraging doctors to be more sensitive. But in doing so, they're increasing the FND profile and the overall number of FND diagnoses. And as you say, despite all the politically correct language, people still hear the take-home message loud and clear: FND=nutters.

Maybe I'm too optimistic, but I do believe some of these FND specialists would respond if they were offered a better explanation for FND than "psychological". The rub is that no-one's gonna come up with that while everyone still fully believes that the disease already has an explanation (psychological).

 

[Jeckylberry]

I 'd like to think so too, @Woolie. I think that is possible if there is investment in patients over pet theory. Alex said to me that he never calls the condition psychogenic and that it was me who was calling it that. He kept shaking his head saying it was a problem with how they were trying to explain it, that it's about the mind teaching the body and the body responding with more of the same and I said well that's psychogenic but he didn't agree It's pointless arguing with a fundamentalist. Alex is a high priest, methinks, so li'l old me ain't gonna make any dents in his faith.

Outside of all this personal investment, it's pretty simple. It's only a matter of time and observation to see if the treatment works or not. There has to be a cut off point where they go, ok that's not working - is it the patient's fault, or is it the diagnosis? I'm sure, like us, there are medical practitioners who would rather hear a rational and satisfyingly rigorous medical explanation for these symptoms. Like us they would surely breathe a sigh of relief.

 

[Woolie]

lex said to me that he never calls the condition psychogenic and that it was me who was calling it that. He kept shaking his head saying it was a problem with how they were trying to explain it, that it's about the mind teaching the body and the body responding with more of the same and I said well that's psychogenic but he didn't agree It's pointless arguing with a fundamentalist.

Absolutely! It would be funny if it weren't so damned serious.

I've maybe already gone on about this (might start sounding like a broken record), but you gotta be worried about how much time they spend discussing how to "explain" the cause of the illness to the patients. Like its so complicated and hard to understand - not simple like MS or lupus or epilepsy!

Outside of all this personal investment, it's pretty simple. It's only a matter of time and observation to see if the treatment works or not. There has to be a cut off point where they go, ok that's not working - is it the patient's fault, or is it the diagnosis?

Sorry to say this, but that ain't gonna happen, not till psychotherapy research cleans up its act. Its for the most part, so badly done that whatever the study, and whatever the disorder, psychotherapy invariably proves helpful. You name it, and psychotherapy works for it. Any type, any dose, pretty much. Obviously, this is unlikely to be due to the all powerful healing powers of psychotherapy itself, but more likely due to poor study methodology. I could go on for hours here...

I'm sure, like us, there are medical practitioners who would rather hear a rational and satisfyingly rigorous medical explanation for these symptoms. Like us they would surely breathe a sigh of relief.

Yea, I'm more hopeful here too. Lots of good guys out there.

 

[ScottTriGuy]

I've noted the title of this thread for a while - never bothered reading it coz I don't have any movement disorders (and limited energy, so focus on ME stuff).

Then I read that the NIH was going to use Functional Movement Disorder as a control group - so I did a little research - as you've all noted earlier, there is no evidence its psychological.

The proponents of this concept are engaging in magical thinking. What is this saying about the NIH folks?

I suppose, given my lived experience with the medical system and ME, I shouldn't be shocked - but I am.

(After thought: it seems there needs to be a specific push back campaign against doctors harming patients by psychologizing physical symptoms.)

 

[Woolie]

What did you read, @ScottTriGuy? Would be interested to know.

I agree with your afterthought. Not enough people notice the flaws in the reasoning, so they just go along with all of this.

 

[Scarecrow]

What did you read, @ScottTriGuy? Would be interested to know.

Did you see this thread?

http://forums.phoenixrising.me/index.php?threads/nih-post-infectious-cfs-study.42873/

The thread is already quite long. The short story is that study details were put up online but have since been removed - if you click on the link in the first post, all you'll see now is a blank page. Some extracts were copied and pasted but we didn't get all the details.

In addition to patients and healthy controls, two patient control groups have been included in the study, one of which is FMD.

 

[ScottTriGuy]

Did you see this thread?

http://forums.phoenixrising.me/index.php?threads/nih-post-infectious-cfs-study.42873/

...

Yes, I'd never heard of FMD before the NIH referenced it - or if I did, I evidently paid it no heed.

 

[btdt]

I ended up here accidently was looking for movement disorder wala here I am.
I was told I had a psychogenic movment disorder in my leg a few years ago at that time it was something the neurologist induced in his office I could not see what he was doing as I was laying down and he was over me blocking my view... but I sure felt it and asked him what it was that was the first time I felt uncontrolled movement that I can think of... since then I have been dx with multiple chemical sensitivity and have a full blown movement disorder not other wise defined as of yet as I am in the 2 year waiting list widow for assess a movement disorder... it looks like huntington's to my family doctor. yes I know psychogenic is in your head but you don't control it and I have not read much about it cause i think it is bs... cause I have lived with cfs fibro for 30+ year and taken a lot of drugs and tried a lot of things.. mostly brain drugs ssri... snri they can make you crazy... they did me...now I am very leary of putting myself thru nonsense cause a doctor wants to get his name on a paper somewhere or do a stupid study ... no thanks not trading my life for your academic benefit. I want to know... I do but blaming my mental health cause your too closed minded to keep looking for the cause is not going to help anything and will likely further damage me... it will surely damage my heart to have to go thru another it is in your head scenario... so I am done with it. My choice and knowing what I have been thru already with psych crap this is the only choice possible for me.. a very personal thing and I have not read this entire thread as I likely should before posting I know this... yet I may have something of value to offer off the cuff...

"Recently, I have been working as part of a team of experts evaluating patients injured from a refinery release in the town of Crockett (investigating the results of the Catacarb spill of August-September 1994) adjacent to the Carquinez Bridge in northern California. UNOCAL had a leak in their tank which grew and released Catacarb and other toxic pollutants which drifted onto two entire towns. Over 700 patients have come into the Good Neighbor Clinic in Crockett (paid for but not run by UNOCAL) because of symptoms; more are on the waiting list. Patients in general have eye-damage; breathing problems; immune abnormalities; rashes; increased mole size; skin tags; possible neuroendocrine disorders (abnormal menstrual periods); neurological abnormalities that include memory, concentration, decreased verbal fluency, and motor problems; and one has a serious movement disorder. Many, but not all, have developed MCS."http://www.anapsid.org/cnd/mcs/bastienmcs.html

There are not many documents that point out that mcs (multiple chemical sensitivity) can cause movement disorders that do not show on testing what would normally be on testing of a person with a movement disorder.

Of late I have learned that MCS is now thought to be an associated with CFS and fibro... which I have had 30 + years. Maybe after a long time you get mcs.. I don't know.
I do know that there is a treatment options
http://www.aehf.com/articles/treatment_options_mcs.html
so it is not a complete dead end just close.