posted
Yes. The third IDSA doc I saw, after testing me for everything but TBIs (already had a positive babesia and equivocal lyme WB) sent me off to an endo, implying strongly to me that my symptoms were menopausal.
When I got a copy of my labs and the summary he sent to the endo, his concluding point was "Absent clinical findings, consider conversion disorder". When I looked the term up, my head exploded.
Fortunately, the endo thought I had lyme and sent me off to one of my first treating MDs.
Sad but true. Kris
Posts: 520 | From Maryland | Registered: Jan 2007
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LisaS
Frequent Contributor (1K+ posts)
Member # 10581
posted
I think this is waht most mainstream drs think we have unfortunately. I hate to say it, but there was times I even questioned myself. I thought how can all my blood tests be so normal when I feel so sick.
ConnieMc
Frequent Contributor (1K+ posts)
Member # 191
posted
LTD companies typically try to use this diagnosis with Lyme patients (as well as fibro and CFS patients) to limit benefits to 2 years. Most LTD policies have 2 year limits for disability due to mental health issues.
I had this pulled on me. After having multiple positive tests for Lyme and Babs, and after seeing a neuropsychologist of my choosing to document cognitive impairment, the LTD sent me to a neuropsychologist who said that I had no physical basis for my illness and it was all in my head. My head exploded as well ... wow, what a crock of ****.
And a neuropsychologist, not even an MD, is qualified to make that statement?
Branding a Lyme patient with mental health issues is a common tactic. And it is hard to get appropriate treatment when a doc puts that label on a patient. A crime, in my opinion. Nevertheless, it is extremely common.
Many of us have been down that road.
Posts: 2275 | From NC | Registered: Oct 2000
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
Oh, yes, purplemom, I've had all kinds of problems stemming from an early diagnosis of conversion disorder.
I was pregnant when I was bitten by a tick on my abdomen. Two months after delivery I fell down when I jumped out of bed when I heard the baby cry at 6 am. My legs wouldn't work right.
I was sent to the hospital for 4 days and was tested for a lot of stuff. Everything came back normal, negative.
I was diagnosed with conversion disorder and postpartum depression. They wrote that I subconsciously didn't want to take care of my new baby.
That diagnosis followed me everywhere, and to this day it haunts me. It even followed me to another state because doctors in NY consulted with doctors in MD about me.
Sometimes I think a lot of doctors are mere robots. I wonder if they ever have an original thought.
Yeah, so I'm the "crazy" lady who shows up at the ER a couple times a year if I happen to collapse in public. People send me there despite my protests because they don't know my story. They mean well but they don't know they're sending me to a wolf den and that I'll have to pay a lot of money for the privilege.
Having a healthcare proxy, a wish list, and phone numbers handy doesn't change things. I still get bundled into the ambulance, then, when I arrive, get insulted by dunces.
One doctor told me, "I think you think you're sick," when I had Bell's Palsy, 80/40 blood pressure, and couldn't sit up or speak. All because an MRI came back normal and I wasn't having epileptic seizures. Duh, okay, so your next immediate thought, doctor, is that I'm FAKING it???
Well, that's a thumbnail sketch of some of my experiences with "it's all in your head".
- Lymelady
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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massman
Unregistered
posted
You can certainly get accused of faking it. I did and it was from an MD I had been friends with and traded services with.
I had respected him greatly until then. Why didn't or couldn't he sit me down and express his frustration about not being able to figure it out?
But in many cases they are dunce robotic labelers. And very unfortunately labels stick with you. IMO their minds shut down even more when they read or hear conversion or somatozation.
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
massman, you voiced exactly what I've said for years. They have to put a label on it so they don't have to feel that they are a failure.
Very egotistical. I guess they think medical science has all the answers or they would just say "I don't know what's wrong with you"
Luckily for me, I found my way to a research hospital when I first got really sick and they ran some very unusual tests and found a lot of abnormal results.
I will dump a doctor immediately if they even hint that they think the cause of my illness is psychological. I would do whatever is needed to purge that kind of diagnosis from my record.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
i had nero-pysch say that on his "opinion" of the testing.
cognitavly- showed drop in IQ, commen findings would see with neruodegeneration disorders. he wanted neruo to re-work up MS, ALS,etc....
but in his "opinion" he rambled on that crap !! went over resutls in his office and i got MAD. he even said that me saying i have good family support and i believe in prayer and refuse to cont a "daily symptom log" (bc has neg. effect to dwell on how crappy u feel everyday !!)...so he said i am not "coping"...told him to leave his personal opinions about faith to himslef
then he wrote about me having an "unusaual rooted delusion" or some crap like that about lyme disease causing this many symptoms. he told me lyme is easily treated and does not cause this kind of global, cognative degeration..asked him if he knew about the alz. study that showed Bb in lesions of brains for reasarch?
all his info was old and he took it personally. then he re-sched. my last appt just after getting call for "opening" bc of a suicide. nice !! i wanted to finsih last appt bc of havin GB surj. in just days
then told me nurses may not have to be "on the best game" to work in home health !! wow- i about came over his desk..gave him a HUGE piece of my mind !!! have run off many nurses over the yrs who cant function independantly and that is scary !!!
was a jerk !! told him wanted my statements, on record.
glad my neuro didnt care about his "opinions""
-------------------- i am not a Dr. any info is only for education, suggestion or to think/research. please do not mis-intuprest as diagnostic or prescriptive, only trying to help. **
dx in 08:lyme, rmsf, bart, babs, and m.pneumonia. Posts: 422 | From TX | Registered: Oct 2008
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massman
Unregistered
posted
Terry I was surprised my MD did that. Typically he was sharp and sometimes he asked me what my opinions were of a patient we shared (not just muscle and / or joint problems) and he listened to and respected my opinions.
I did grt very angry (talk about lyme rage !) and yellrd at him when he did that.
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posted
From Wikipedia's Page on Conversion Disorder, this person sums it up very well.
"Please read this. It makes a lot of sense. Once your tagged as "Psychogenic" on your medical charts, well....
Read on:
"Dear Sirs, Paul Wicks and colleagues
It was once put to me that a neurologist is a bit like a car mechanic- he lifts up the bonnet and can find nothing wrong even though he might freely admit that the engine is not working properly. It is suggested by Sharpe and others that such analogies are a good start in building a therapeutic consensus with ultimate referral to a psychiatrist. Other metaphors also abound, software error for example. Shorter may state that a patient's demand for organicity and a physician's willingness to meet it condemns them to perpetual disability, such a value judgement is of course spurious in the extreme.
If I take my car to a mechanic I would rapidly lose confidence in his abilities if he was unable to uncover why the brakes did not work. Similarly any IT consultant who described the brain as a "computer" would ultimately gather equal derision- the brain is not a computer. With over 50 trillion cells in the human body the diagnosis of conversion disorder can never be more than one of arrogance and ignorance. Hysteria is not a theatre of disorder because patients are play acting, rather they are desperately trying to interpret the often vague warning lights from the body and brain that some of those 50 trillion cells are not working as they should, damaged diseased etc. Once organicity is recognised patients are liberated from the worry of suffering and the social attempt to convince others that they are actually ill. Their suffering is no longer played out within a cultural milieu of desperation and recourse to thearpists like Mesmer, Carson, Sharpe or Freud but rather it is understood in the context of measurable organic anomalies. Anomalies that they themselves can work to live with or overcome.
Frans De Waal informs me that persistent and long term "conversion symptoms" do not exist in primates. Like children apes may pretend to be hurt or feel weak when faced with fear but such aspects are transitory. Extreme emotional events may cause many diseases to be manifest, heart attack and stroke to name but two. It is only in conversion disorder that neurology and psychiatry, seemingly isolated within medicine, pursue the psychosocial at the expense of the biological. Carson, Sharpe and others view illness in others as a child-like act. We as a species are still children, Rita Carter has said that the map of the human brain is more akin to medieval maps of the world. Thus faced with a lack of understanding of ourselves and by others we do indeed act oddly, even immaturely when faced with illness we do not understand. This notion is not new: "Variability is the law of life, and as no two faces are the same, so no two bodies are alike, and no two individuals react alike and behave alike under the abnormal conditions which we know as disease. Medicine is a science of uncertainty and an art of probability." William Osler, Canadian Physician. What is new is the seeming willingness to embrace a psychosocial model at the expense of the biopsychosocial.
Blake depicted Newton as a demonic figure measuring all with his compasses. I accuse neurology of the reverse, it fails to use the compasses at its disposal, it decries the technological investigation of patients, it marginalizes cutting edge technology rather than embrace it. "No neurologist in the UK uses QEEG". Yet Prof. Duffy, neurologist at Harvard is quite happy to use it to benefit and liberate HIS patients from the stigma of not finding anything wrong.
Ahh yes my engine is indeed intact- but take it for a spin and you will find the oil is not circulating properly and the wheels fall off as you forgot to check the bolts- to do so would have only convinced me that there was something wrong, when of course in your opinion everything was A ok.
Finally I applaud you all. In a consumer market where the internet, social networking, even simply money can all buy that second opinion- it is a sure way to lose patients by writing an article that does not present organicity as a fundamental part of this spectrum of symptoms, that does not even acknowledge that the DSM was born out of intense controversy, more psychiatric cook book than scientific analysis. Unless the article is radically developed towards the controversy of these symptoms then even more patients will find it irrelevant to any discussion they could have with a neurologist or psychiatrist. Emily Dickinson said "Truth is Manifold". Alas on wikipedia truth is the school boy who can shout loudest, seem the cleverest, pass all the exams by putting down what sir told him to- yet in fact have not a single original idea in their head.
Sufferer of POTS with technological evidence of peripheral neuropathy in bladder and bowel also provisional suggestion of peripheral motor neuropathy in legs (may have yet more tests, further tests on bladder as neuropathy was severe). All initially diagnosed as conversion disorder despite family history of vascular defects etc, shouted at by one neurologist, victim of spurious freudian nonsense at the hand of another etc, etc. --
That's all plenty fair, and I'm not going to argue that conversion disorder doesn't exist -- as long as it's in the DSM IV, it "exists" at least as much as any diagnosis of exclusion can be said to "exist", and the main focus of an encyclopedic article should be on its definition, etc. But I think what you're missing here is that there are massive consequences for patients who are misdiagnosed with conversion disorder simply because their neurologist(s) don't know what's wrong with them. It means massive social stigma, it means virtually no treatment for what can be debilitating symptoms for an extended period of time, and once such diagnoses are made, it can often lead to further difficulties if new symptoms emerge requiring doctors to take another look at a physical medical cause. Given that a huge number of conversion disorder diagnoses are found to be misdiagnoses in the long run, it's bound to be a controversial subject, and it will remain so at least until some medical doctors stop allegedly misusing it as a means to explain anything with symptoms that they can't otherwise diagnose.
If you don't want to have to deal with that debate in the informational sections of the article, it might be worthwhile to have a specific section that discusses the controversies around it.
To make my own views clear, in case they aren't already, I think it is arrogant in the extreme for any doctor to assume that if they don't know what's wrong with a patient, it must be psychological. I think this diagnosis should be reworked to demand positive proof of some characteristic symptom(s), rather than vague "stressors". And I think that undiagnosable neurological symptoms that fall outside of that should probably be idiopathic something-or-other that assumes no particular base cause, psych or otherwise, when none can be found -- leaving the door open for future diagnosis and for consideration of various symptomatic treatment when available.
That said, I don't rule the universe, and I recognize that this page should be a collection of current information, not anybody's particular views -- still, I'd consider addressing some of the controversy, rather than pretending on the main page that it doesn't exist. "
nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
I could add my own experiences of Dr.s inclined to this mode of cop-out (for example, an ID Dr. who said I just needed a "pep-talk" and that I just needed to exercise and be motivated), but I didn't sleep last night so need to be brief.
You should all keep this in mind:
Before MS was "discovered" and then defined as a diagnosis/condition, those patients that would later have been diagnosed with MS were diagnosed with "Hysteria" (the late 19th and early-to-mid 20th century version of Conversion disorder and Somatization disorder).
Not to mention all the other conditions labeled as Hysteria.
Anyway, all anyone need do is look at the history of MS to understand that these labels say a great deal about those that apply them, and nothing about those they are applied to.
'Kete-tracker
Frequent Contributor (1K+ posts)
Member # 17189
posted
The local ER labelled me with the olde 'somatization disorder' stamp after only the 2nd visit. I was naive & thought it was a medical condition that required a certain medicine. LOL Major waste of time & $$. They just thought I was nuts. Of course, I had no way to know that at the time... &, to be fair, they had no Way to test confirm I had Lyme anyhow. (prob. never will) I doubt many ER personnel there (Exeter, NH) can even 'dx' Lyme when presented with typ. Lyme rashes!
Even when seriously CDC+ positive results came back from Quest in Boston, & I'd started treatment for Lyme from my PCP, they couldn't shoo me out'a that ER quickly enough [after a serious initial Jarsch-Herxheimer reaction flared up]. Neither they OR my PCP (!) even MENTIONED "herxing" to me. I had to READ about it in Dr B's 2005 "guidelines"! I know better now.
--------------------------- From Wiki: Somatization disorder is a somatoform disorder.[1] The DSM-IV establishes the following five criteria for the diagnosis of this disorder:[2]
*a history of somatic symptoms prior to the age of 30 *pain in at least four different sites on the body *two gastrointestinal problems other than pain such as vomiting or diarrhea *one sexual symptom such as lack of interest or erectile dysfunction *one pseudoneurological symptom similar to those seen in Conversion disorder such as fainting or blindness.
Such symptoms cannot be related to any medical condition. The symptoms do not all have to be occurring at the same time, but may occur over the course of the disorder. If a medical condition is present, then the symptoms must be excessive enough to warrant a separate diagnosis. Two symptoms cannot be counted for the same thing e.g.if pain during intercourse is counted as a sexual symptom it cannot be counted as a pain symptom. Finally, the symptoms cannot be being feigned out of an effort to gain attention or anything else by being sick, and they cannot be deliberately induced symptoms. ------------------------------- SO... if it hurts in more than 3 places, (& no "tests" identify any physical cause) it's not real. It's all in your head! ;-)
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