the first thing a doc is tasked to do is to ''do no harm". Ordering additional testing without cause goes against that. I know a lot of people (HA peeps) don't see the harm of ordering tests but the harm can be two-fold 1, medical testing, often, has its own complications and risks) 2. ordering peace of mind tests. which some docs DO do under the assumption that people will accept the results and move on---which most do provided you are not suffering from anxiety---However such tests ONLY keeps a person mired in anxiety. Here is a neurologist from my area speaking about a group of teens who developed conversion disorder that made the news about 2 yrs ago speaking on that subject. Actually this neuro is from the same practice that my daughter goes to.
By Sandra Tan
NEWS STAFF REPORTER
Published:February 8, 2012, 11:41 PM
Updated: February 10, 2012, 5:37 PM
The national media spotlight has been shining on rural Le Roy for weeks, lending heat to the questions surrounding the strange illness that has led to 18 students exhibiting uncontrollable gestures, sounds and seizures.
The teenage Le Roy girls have made for riveting TV in recent weeks, with close-ups of one-time cheerleaders and student-athletes now twitching and pleading for answers.
The scrutiny has led to debates about whether the media are helping parents find answers to a "mystery illness" or exploiting vulnerable families and worsening the plight of sick children.
This week, WGRZ-TV announced it will stop repeatedly showing footage of twitching girls they've interviewed.
The initial diagnosis of the majority of the afflicted students was that individually, they suffered from conversion disorder, and collectively, they suffered from mass psychogenic illness. A few others had pre-existing conditions, including one with Tourette's syndrome.
Speculation persists about whether other triggers could have led to this cluster of illnesses.
The Buffalo News has attempted to summarize much of what's happening in Le Roy, based on data from the Department of Health, the Environmental Protection Agency, the school district and interviews with nearly a dozen neurologists, researchers, psychiatrists and other physician specialists.
Q: What's the difference between conversion disorder, mass hysteria and mass psychogenic illness?
A: Conversion disorder occurs when someone develops neurologic symptoms, such as involuntary movements and sounds -- "tics" -- that have no known physical cause. Conversion disorder is believed to be the physical manifestation of psychological stress.
"These types of symptoms are a very important part of our humanity," said Dr. John T. Walkup, a child and adolescent psychiatrist and chairman of the Medical Advisory Board of the Tourette Syndrome Association. "People who are vulnerable to this are usually highly smart, vulnerable to suggestion and very sensitive."
Symptoms in these cases are not fake but are believed to be produced by the brain's subconscious.
When conversion disorder occurs in a group of people, typically from a close-knit community, the diagnosis for the group is mass hysteria or mass psychogenic illness. Mass psychogenic illness is the preferred medical term because of the negative connotations associated with mass hysteria.
Mass psychogenic illness is far more common in females than males.
Q: How common are these conditions?
A: Conversion disorder is common. Neurologists see such cases on a regular basis. Some, however, are careful when they explain the diagnosis to a patient because they don't want patients reacting negatively.
"I like to describe it as a subconscious movement disorder," said Dr. Thomas Guttuso Jr., a neurologist and movement disorder specialist with the Jacobs Neurological Institute. "I, generally, very much try to avoid terms like 'psychogenic,' certainly 'hysterical.' They tend to imply some kind of character weakness in the patient."
Most people experience conversion disorder on a much lower level. If asked to give a speech, for instance, some develop temporary hand tremors, rapid heart rates and shortness of breath.
Mass psychogenic illness is far more rare, but it's probably more common than people think. The condition has been documented for hundreds of years all around the globe and attributed to everything from unknown chemical warfare agents to demonic possession.
In recent decades, most cases of mass psychogenic illness have been found to affect female students in rural schools.
Q: How is conversion disorder diagnosed?
A: Neurologists are trained to recognize the difference between involuntary gestures or tics stemming from physical brain malfunctions and the abnormal movements generated from psychological triggers.
True tic disorders, such as Tourette's syndrome, look different than what these students exhibit.
"In neurology, this is what we do, this is what we've been trained to know," said Dr. Lazlo Mechtler, vice president of Dent Neurologic Institute, which has evaluated and treated many of the Le Roy girls. "It's a science that's been passed down for 300 years. To us, it's our bread and butter."
Neurologists recalled watching a news segment of one of the affected Le Roy girls with a flailing right arm. The video subsequently showed the same girl carefully applying eye liner with the same arm. They said that diversity of movement cannot be explained by any other neurological condition.
Neurologists usually order blood work and imaging tests to double-check their initial findings and rule out other causes as a precaution, but the tests rarely contradict the initial diagnosis.
In the Le Roy outbreak, far more tests than usual were done on these girls because so many got sick. More environmental factors needed to be ruled out. Most of the afflicted students were seen and tested by multiple physicians.
Three of the original 12 were found to have pre-existing tic-related disorders, including one with Tourette's syndrome. The rest were repeatedly diagnosed as having conversion disorder by more than one physician.
Most of the patients seen at Dent were tested for thyroid disorders, lupus, Lyme disease, liver abnormalities, heavy metals such as lead and mercury, autoimmune disorders and strep, Mechtler said. They also had MRI brain imaging and EEG brainwave monitoring.
Q: Given family and community concerns in Le Roy, why not do more tests, just to make sure?
A: Neurologists worry that conducting too many medical tests can reinforce a patient's false belief that something undiscovered is at the heart of the condition and worsen symptoms.
Patients who demand more tests over the recommendation of their physicians will sometimes also refuse treatment until the "real cause" is found.
"As the hunt goes on to find cause, often the people with conversion are waiting and not engaging in any treatment to get better," said Walkup, who is also director of the Division of Child and Adolescent Psychiatry at Weill Cornell Medical College and New York-Presbyterian Hospital.
Of all the afflicted Le Roy students, the ones who have accepted their diagnoses and continued to receive treatment are the ones who have improved or been cured, said Mechtler and his colleague, Dr. Jennifer McVige.
If enough tests are conducted on an individual, eventually, a test will turn up something abnormal. Doing all the testing required to check and see if every other patient has the same abnormality and determine a plausible link among them all is both time consuming and unnecessary, physicians say.
Q: Some of these girls say they don't believe they've led stressful lives. How could this be the cause?
A: Physicians say it is not unusual for a patient to initially inform them that they don't know of any trauma or stress that could be the underlying cause for their condition. Sometimes, a major life stress is subconscious -- it exists beyond a patient's awareness -- and does not come to light without more probing discussion or conversation with a physician or mental health professional.
The Health Department report released late last week noted that most of the students diagnosed with conversion disorder "all had significant life stressors, a common factor with conversion disorder."
Q: How can something completely mental lead to such physical symptoms?
A. The brain is extremely powerful. There have been countless documented medical cases of physically healthy patients suffering from numbness, paralysis and even blindness that can be attributed solely to a psychological cause
so while I know we anxious want more tests, more often than not, it only hinders getting the help we need to get better.
btw the girls involved (as of the last update) are recovering/recovered. they recovered through anxiety meds and therapy.
KM--- I do know some about brain tumors. what actually needs to be said to you to help you move on? I mean one of the biggest issues with people on az is that they look up stuff online and in their state of mind everything seems to point to their fear. It makes them think doctors aren't listening. Barring an actual incompetent doctor....it isn't that they are not listening. it is only the've seen X disease so many times that they just KNOW that isn't what is going on. In your case, you had a ctscan. Likely because the doc wanted to help ease your mind. Which, it plainly did not.
As far as which eye symptoms: brain tumors will cause blind spots. Once it happens, it is 24/7. For my dad he lost all peripheral vision in his right eye. I don't mean blurry or weird or fuzzy, but gone. He had simple partial seizures. His first symptom (in retrospect) was about a year before diagnosis --impotence. About 3-4 months before diagnosis he lost the peripheral vision, he lost function of his left arm and left leg, he was slurring speech, and, of course, the seizures. He went to the eye doc. eye doc could see a shadow in/on his eye. eye doc said, "you need to see a neurologist, I think you have a brain tumor." He had a malignant tumor about the size of a quarter located in his temporal lobe. The temporal lobe explains his simple partial seizures perfectly.
My sister had a benign menigioma located on her right frontal lobe at midline (basically on top of hers just back from her forehead). It was the size of a baseball at diagnosis. It was there for about 3-4 yrs by time diagnosis. My sister's first symptom, due to location, was personality changes (and possibly thyroid issues). About a year before dx, she was steadily having worsening motor problems. she had balance issues. I mean to the point that she needed help walking downstairs. she couldn't get off of the lawn mower. she couldn't support herself on her left leg. Her left arm was used as just a "helper". by that I mean it was only good to hold something in its place.... she said she just laid her hand the car steering wheel, for instance. She had MOTOR focal SEIZURES. this means, at times, her left hand would just curl up. she would be going about her business then she would notice her hand was fisted. it didn't hurt. it was just closed up. the seizures also would cause her left arm or leg to just shake. I don't mean vibrate but shake. she described one time, while at the beach, her leg just started to severely shake about. again not vibrating or twitching or buzzing BUT bouncing. Others noticed as well. what got her to the hospital was a tonic/clonic seizure (aka gran mal). My sister AND her husband KNEW for a long time something was wrong, but she doesn't have insurance... so she carried a bugger of a tumor for years. That was in 2008. she is fine.
a classmate has a glioblastoma--- he was having seizures like my sister-motor focal. his arm would just draw up to his side. He was also having TREMENDOUS headaches.
a neighbors grandson's tumor caused seizures.
a friend's brother's presented with a tonic/clonic seizure.
as a kid, I knew a little 3yr old who had a brain stem tumor.
my children's preschool teacher's 14 yr old daughter had a brain stem tumor--- her daughter began tripping and falling down all of the time.
the most COMMON feature that you will note is seizure. that is because brain tumor stress a brain and when a brain gets stressed, it sends out messed up electrical charges. VERY often the pressure of a tumor will cause pressure changes in the eye. Meaning the glaucoma test, tests more than glaucoma. If pressure is elevated in the eye (normal pressure is anywhere in the teens) it can point to issues within the brain.
Finally, AS I also mentioned in an earlier post, the problem with looking things up online is that one almost always only finds OR only keys in on is the HORROR stories: the stories of incompetent doctors. However that is not showing the true picture. AS it is almost always only horror stories that get told. the VAST, VAST majority of people with X disease are diagnosed early on. AND those who are anxious or those who have decided that they must have X illness prior to looking things up are the people who are most harmed by these stories.