Has Anyone Heard of "Morgellons Disease"?

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Gary
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Has Anyone Heard of "Morgellons Disease"?

Post by Gary » Thu May 25, 2006 3:40 am

"Your idea of a donut-shaped universe intrigues me, Homer; I may have to steal it."

--Stephen Hawking makes guest appearance on The Simpsons

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Post by Ralph » Thu May 25, 2006 6:15 am

Popular Mechanics

Making Their Skin Crawl

People with creepy symptoms find a diagnosis on the Internet. But are they jumping to conclusions?

BY BENJAMIN CHERTOFF
Photograph by Brent Humphreys
Published in the June, 2005 issue.

Miles Lawrence, a landscaper in Florence, Texas, was supposed to be packing for a road trip to Las Vegas when he noticed his finger tingling. He stared in disbelief, he says, as "little spiny things" sprouted out of the skin where he'd just removed a splinter. He grasped one of the spines with tweezers and pulled.

Instantly, he says, a bolt of pain shot up his arm. He tugged on another one and the pain snaked up his neck. Then the really creepy part began. "It felt like bugs under the skin of my arms, in my joints," Lawrence says. "I freaked out."

Across the country, thousands of people complaining of the same horrifying phenomenon have formed an illness subculture. They share lists of symptoms, medical speculation and tales of run-ins with mainstream doctors at www.morgellons.org, the official Web site of a group called the Morgellons Research Foundation. It was founded in 2002 by Mary Leitao in McMurray, Pa. Leitao named the condition Morgellons Disease--after a disease with similar symptoms mentioned in a 16th-century medical text--while investigating a skin affliction on her then-2-year-old son.

Morgellons has barely registered on the radar of mainstream medicine. Few doctors have heard of the condition; fewer still know what to make of it. So when people walk into an examination room and announce they have Morgellons, they are often met with skepticism. Conflicts would seem to be inevitable.

"Dermatologists are afraid to see these patients," says Dr. Peter Lynch, professor emeritus of dermatology at the University of California, Davis. He says he has examined about 75 people with Morgellons-like symptoms in the past 35 years and believes they suffer from delusional parasitosis--literally, delusions of parasites in the skin. It's a diagnosis people don't like. One patient, threatening malpractice, convinced the state medical board to investigate Lynch. Another warned he had a pistol in the glove compartment of his truck, Lynch says. "He told me, 'I'm going to shoot the next doctor who tells me it's in my head.'"

LAB RESULTS
Members of the Morgellons online community say that, like those who suffer from breast cancer and AIDS, they merely want appropriate resources devoted to their illness. A letter-writing campaign recently netted a modicum of high-profile attention when U.S. Sens. Dianne Feinstein and Dick Durbin contacted the Centers for Disease Control and Prevention (CDC), asking whether the organization had investigated the illness. The answer was no. "Our laboratories are available," says CDC spokeswoman Jennifer Morcone. "But we need a clinically appropriate sample." So far, she says, they've only received samples sent in by patients.

There's a reason for that. Lynch and a number of other doctors say they have sent samples to hospital pathologists, medical labs and state health boards, which have uniformly failed to find any sign of an infection. If there's nothing tangible to investigate, there's no reason to call in the big guns at CDC headquarters.

BACTERIA CULTURE
When Miles Lawrence sped to the hospital, he was told he had delusional parasitosis and that the weird spines were "just dirt." But over the next week his symptoms got worse. He scratched at his elbows and noticed more fibers, and little black specks. "It was like they were fighting back," he says.

Eventually, he found his way to a medical professional who does take the idea of Morgellons seriously. Ginger Savely, a nurse practitioner in Austin, Texas, says she has treated 35 patients with symptoms. "Everyone tells the exact same story," she says. "It's just so consistent." Savely prescribes her patients a course of broad-spectrum antibiotics. "If I knew what I was dealing with," she says, "it would be easier to treat." Yet, she says, her patients--including Lawrence--improve within weeks.

Other clinicians have likewise prescribed antibiotics. Dr. Raphael Stricker, a Lyme disease specialist in San Francisco, sees a handful of Morgellons patients--all of whom have tested positive for chronic Lyme disease. He thinks that Borrelia burgdorferi, the bacteria behind Lyme disease, has set his patients up for another, as-yet-unidentified, infection. And Dr. George Schwartz, a Santa Fe, N.M., trauma specialist, treats his patients with antibiotics targeted to Stenotrophomonas maltophilia--a usually harmless waterborne bacterium--and says he's seen them improve in only 48 hours.

HEAD GAMES
The apparent success of antibiotic treatment for Morgellons hasn't swayed doctors like Lynch--mainly because pathologists have failed to find an infectious agent. "These scientists can recognize things down to the prion level, and viruses that do everything to evade detection," he says. Lynch's preferred treatment: the antipsychotic drug risperidone--which works, he says, in as little as two weeks.

Another prominent dermatologist, who insisted on anonymity out of concern for his safety, says he has diagnosed 50 or so Morgellons patients with cutaneous dysaesthesia--a neurological disorder that can result in the sensation of scuttling insects. And the spiny things? "In every case I've seen it's a textile fiber, and it's on the surface of the skin," he says. He typically puts a cast over the lesions to prevent further irritation and after four weeks removes it. "Guess what?" he says. "The lesions are healed."

Leitao and other Morgellons activists say that, with the Web as a primary tool, they'll continue working to have the illness investigated as an infectious disease. Doctors interviewed by PM say this unilateral approach hinders objective analysis of symptoms they've seen for decades. Well, all symptoms except for one: Widespread reports of the strange fibers date back only three years, to the time they were first described online, at www.morgellons.org.
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Post by Teresa B » Thu May 25, 2006 8:09 am

Well, if anyone has heard of this disease, it should be me! But alas, I have never even heard the name of it before.

I was unable to open the link, but I read Ralph's post.

This is classic "Delusions of Parasitosis" with an eponym stuck on it. It is real, but more in the line of obsessive-compulsive disorder or a paranoia that fixates on the idea of parasitosis.

It is possible that a small minority of cases derive from something like Lyme disease, as that can involve the nervous system. "Formication" is the symptom of feeling bugs crawling on the skin, which can derive from nerve damage from various causes.

We derms do hate to see one of these patients in the office, because we can do so little for them, and they can get violent or threatening at times. Having no insight that their problem is psychiatric, they bristle (no pun intended) if you try to refer them to a shrink.

I had one large male patient who became threatening when I suggested I didn't see any parasites on the "sample" he presented me--a piece of old, dry wood from his porch.

Another woman whom I tried to help by prescribing an OCD drug figured out it wasn't an anti-parasitic agent, and sent me a 3-page letter stating how she would make sure I never practice medicine in this town again, ad nauseum.

Yet a third was a dear little old man who got better for a couple of days after I prescribed him a bland lotion of some type, but then called back to say the bugs had figured out how to build "force fields" against the lotion. (I assume he was a Star Trek aficionado.)

Whenever a patient brings in a little jar of "parasites" it's going to be a long day. (Never once has a patient with ACTUAL parasites brought in the jar.)

And you thought dermatologists just popped zits all day! 8)
Teresa
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Post by Ralph » Thu May 25, 2006 9:28 am

Why is this "disease" named after the Great Navigator? :)
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Post by Gary » Thu May 25, 2006 9:33 pm

Thanks for the Popular Mechanics article, Ralph.
Teresa wrote:I was unable to open the link, but I read Ralph's post.

Here are some photos.



Image

Image

The "fibers" that the article was referring to.

Image

Image

Image
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Post by Corlyss_D » Thu May 25, 2006 9:40 pm

Yuck. It looks like a creature from another planet.
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Post by Ralph » Thu May 25, 2006 10:16 pm

Corlyss_D wrote:Yuck. It looks like a creature from another planet.
*****

Or someone who's listened to AC music for a long time.
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Post by Corlyss_D » Fri May 26, 2006 12:52 am

The lesions certainly don't look imaginary or psychosomatic.
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Post by Teresa B » Fri May 26, 2006 6:39 am

AHEM!

Having seen all this stuff before (It's a lousy job [...hmm, not literally in this case] but somebody's gotta do it) I will tell you definitively what you are looking at in the disgusting pics:

The thigh in the first pic shows classic erythema ab igne, which comes from keeping a heating pad too long on an area. Nothing else produces this skin appearance.

The second pic shows shallow ulcers which are angulated, indicating they are self-inflicted.

The "fibers" in all 3 following pics are highly magnified threads from clothing, or whatever cloth materials may have been on the skin, mixed with dried blood crusts and/or some sloughed dead skin.

Now to have breakfast. :D
Teresa
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Post by Ralph » Fri May 26, 2006 7:28 am

Teresa B wrote:AHEM!

Having seen all this stuff before (It's a lousy job [...hmm, not literally in this case] but somebody's gotta do it) I will tell you definitively what you are looking at in the disgusting pics:

The thigh in the first pic shows classic erythema ab igne, which comes from keeping a heating pad too long on an area. Nothing else produces this skin appearance.

The second pic shows shallow ulcers which are angulated, indicating they are self-inflicted.

The "fibers" in all 3 following pics are highly magnified threads from clothing, or whatever cloth materials may have been on the skin, mixed with dried blood crusts and/or some sloughed dead skin.

Now to have breakfast. :D
Teresa
*****

Teresa,

Would you be interested in doing a new CMG feature, "Skin and Sonatas?" People would send their dermatological questions to CMG with a donation and you'd answer them with some kind of music-related twist. CMG would get 25% of the take, you and I split the rest. Coirlyss will go along with this, I'm certain.
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Post by Agnes Selby » Fri May 26, 2006 7:32 am

The last picture looks like a dead cockroach caught in a
spider web. :( :?

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Post by Corlyss_D » Fri May 26, 2006 1:29 pm

Teresa B wrote:AHEM!

Having seen all this stuff before (It's a lousy job [...hmm, not literally in this case] but somebody's gotta do it) I will tell you definitively what you are looking at in the disgusting pics:

The thigh in the first pic shows classic erythema ab igne, which comes from keeping a heating pad too long on an area. Nothing else produces this skin appearance.

The second pic shows shallow ulcers which are angulated, indicating they are self-inflicted.

The "fibers" in all 3 following pics are highly magnified threads from clothing, or whatever cloth materials may have been on the skin, mixed with dried blood crusts and/or some sloughed dead skin.

Now to have breakfast. :D
Teresa
:D Thanks. That was just what I was looking for.
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Post by Teresa B » Fri May 26, 2006 4:51 pm

Glad to oblige, glad to oblige.

Ralph, great idea! Maybe something like this:

Q: What can I do about my face constantly doing this--> :oops: ?

A: Avoid midday sun and stick to "Moonlight." :wink:

By the way, Ralph, I'll be counting on you to defend any and all malpractice suits arising from said musico-medical advice.

Agnes, if you show these pics to Theo, he will doubtless thank his lucky stars he went into cardiology!

All the best,
Teresa
"We're all mad here. I'm mad. You're mad." ~ The Cheshire Cat

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Post by Gary » Fri May 26, 2006 6:30 pm

Thanks, Doc.

So this should be relegated to the same category as the Loch Ness Monster.
"Your idea of a donut-shaped universe intrigues me, Homer; I may have to steal it."

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Post by Teresa B » Fri May 26, 2006 6:34 pm

Gary wrote:Thanks, Doc.

So this should be relegated to the same category as the Loch Ness Monster.
You are welcome, and 'fraid so.

Teresa
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Post by Corlyss_D » Fri May 26, 2006 9:35 pm

However, thanks one and all for the diversion from politics. 8)
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Post by jbuck919 » Fri May 26, 2006 10:09 pm

Corlyss_D wrote:However, thanks one and all for the diversion from politics. 8)
You think this has no political ramifications? Delusional parasitosis = official diagnosis = should psychiatric disorders be covered under insurance = oh yeah, BTW, why don't all Americans have health insurance?

Double 8) and :)

There's nothing remarkable about it. All one has to do is hit the right keys at the right time and the instrument plays itself.
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Post by Corlyss_D » Sat May 27, 2006 12:40 am

jbuck919 wrote:
Corlyss_D wrote:However, thanks one and all for the diversion from politics. 8)
You think this has no political ramifications?
Yes, I don't. :P
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Post by Agnes Selby » Sat May 27, 2006 4:27 am

Agnes, if you show these pics to Theo, he will doubtless thank his lucky stars he went into cardiology!

All the best,
Teresa[/quote]
--------------

Well, I suppose cardiology has its nasties too. Like people dying of heart attack in the middle of a bridge game!!!! :P

Regards,
Agnes.
-------------

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Post by jbuck919 » Sat May 27, 2006 9:57 am

Teresa B wrote:AHEM!

Having seen all this stuff before (It's a lousy job [...hmm, not literally in this case] but somebody's gotta do it) I will tell you definitively what you are looking at in the disgusting pics:

The thigh in the first pic shows classic erythema ab igne, which comes from keeping a heating pad too long on an area. Nothing else produces this skin appearance.

The second pic shows shallow ulcers which are angulated, indicating they are self-inflicted.

The "fibers" in all 3 following pics are highly magnified threads from clothing, or whatever cloth materials may have been on the skin, mixed with dried blood crusts and/or some sloughed dead skin.

Now to have breakfast. :D
Teresa
I love smart people who are experts in their areas. Let's you, Ralph, and I get together for lunch this summer and I can regale you about the history of the Pythagorean Theorem. 8) :D

There's nothing remarkable about it. All one has to do is hit the right keys at the right time and the instrument plays itself.
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Post by Teresa B » Sat May 27, 2006 1:09 pm

Hey thanks, John, sounds like a plan. I may know my dermatology, but I am seriously Pythagoras-challenged. :wink:

Teresa
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Post by Gary » Sat May 27, 2006 8:41 pm

Well, Morgellons Disease may be imaginery, but I'm sure I'm psychic :) since Yahoo News just posted this article.
Mystery Disease Makes Peoples' Skin Crawl
Ker Than
LiveScience Staff Writer
LiveScience.com
Fri May 26, 4:00 PM ET


Reports of a mysterious medical condition are cropping up across the country but doctors are divided on whether it is a real disease or all in their patients' heads.

Called Morgellons Disease, patients who report having it describe sensations of creepy-crawlers beneath the skin and fibrous filaments oozing out of open wounds.


Interest in the disease was recently rekindled after afflicted Texas teenager Travis Wilson committed suicide about a month ago.


Symptoms


To date, no clinical studies have looked into Morgellons and only one paper mentioning Morgellons has been published in a medical journal. Appearing in a recent issue of the American Journal of Clinical Dermatology, the paper is co-authored by members of the Morgellons Research Foundation, a non-profit organization devoted to raising public awareness about the disease.


As of February 2006, more than 2,000 reports of the disease have been reported on the Foundation's website. Reports come from all 50 U.S. states and 15 nations, including Canada, the UK, Australia and The Netherlands.


The majority of reports have come from Texas, California and Florida.


Patients with the disease often describe feelings of insects or parasites scuttling beneath their skin and open lesions that heal slowly and which ooze out blue and white fibers, some as thick as spaghetti strands. Attempts to remove the fibers are said to elicit shooting pains radiating from the site.


The lesions range from minor to disfiguring in appearance and fibers appear either as single strands or as bundles. Patients also sometimes report the presence of fibers or black granular specks on their skin even in the absence of lesions. Some patients even report symptoms of the disease in their pets--dogs mostly, but also cats and horses.


According to statistics from the Morgellons Research Foundation, about 95 percent of patients also report suffering from disabling fatigue, or "brain fog," that hinders their ability to pay attention. Other reported symptoms include joint pain, sleep disorders, hair loss, decline in vision, and even the "disintegration" of perfectly healthy teeth. It appears that once patients contract the disease, they have it for life. To date, there have been no reports of spontaneous remissions.


Strange fibers


A preliminary analysis of the fibers suggests they are more than just lint from household materials such as clothing, carpets or bedding, said Randy Wymore, an assistant professor of pharmacology and physiology at Okalahoma State University and the director of research at the Morgellons Research Foundation.


"The fibers are not common textiles, nor are they black specks of pepper, as several dermatologists have proposed," Wymore told LiveScience.


Further deepening the mystery, some analyses suggest the fibers might be made of cellulose, a molecule generally found in plants.


"They're basically fibers that you wouldn't expect to see in humans," said Raphael Stricker, a Lyme disease expert at the California Pacific Medical Center in San Francisco and a medical advisor to the Morgellons Research Foundation.


The disease is named after a medical condition described in 1674 by the British author Thomas Browne. Known as "Morgellons," Browne said the disorder caused children to "critically break out with harsh hairs on their backs..." The Morgellons Research Foundation says that it is doubtful that the 17th century disease is related in any way to modern day Morgellons.


Skepticism


Despite increasing reports of the condition, many doctors have barely heard of the disease and many treat it with a heavy dose of skepticism.

Michael Giradi, a dermatologist at the Yale School of Medicine, had never heard of Morgellons but when its symptoms were described to him, he was reminded of another disorder that is well known to doctors.

"They just renamed it," Giradi told LiveScience. "We just call it delusions of parasitosis."

Also known as Eckbom syndrome, delusional parasitosis is a psychiatric disorder in which patients fervently believe their bodies are infected by skin parasites that do not exist.

"It's basically when a patient thinks that there's something coming out of their skin, a material or bug of some sort, when truthfully there's nothing there," said Stacy Beaty, a dermatologist at the Saint Louis University School of Medicine.

In medical schools, physicians learn to watch out for the "matchbox sign" of delusional parasitosis, when patients bring in hair, skin or clothing lint, sometimes in matchboxes, that they claim contain the insects or parasites responsible for their torment. However, when examined, the samples reveal no such thing. The lesions and scratches sometimes seen on patients with delusional parasitosis are usually self-inflicted, Beaty said.

"To rule out any infectious causes and also to put the patient's mind at ease, a lot of times we'll do skin biopsies," Beaty said in a telephone interview. "If we feel that it'll be helpful, we might also start different anti-psychotic or anti-anxiety medicines."

Beaty said she was vaguely familiar with reports of Morgellons disease, but said that other doctors she had queried had never even heard of it.

In response to rising media coverage about the condition, the Los Angeles Department of Health Services recently issued a statement that said bluntly:

"No credible medical or public health association has verified the existence or diagnosis of 'Morgellons Disease.' The current description of the disease is vague and covers many conditions."

Wymore, the Oklahoma State University researcher, says that debating whether Morgellons is a real disease or not is not the right approach.

"This population is suffering greatly," Wymore said. "A better question would be, 'Is Morgellons Disease a purely psychiatric disorder?' and the answer is 'No.' Morgellons also has physical effects on a person. In addition to the skin lesions and the unusual fibers and other shed material, there are nervous system effects that include: behavioral changes, cognitive changes and peripheral neuropathy."

http://news.yahoo.com/s/space/20060526/ ... sskincrawl
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Post by John Bleau » Sat May 27, 2006 8:52 pm

It just might take. During my trip I saw an ad for Restless Leg Syndrome medicine. An incredibly large percentage of American TV advertizing is for drugs. Marketing can play a big role in perceived need. I've been close enough to the snakeoil bastards to know very well how they operate.

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Post by jbuck919 » Sat May 27, 2006 9:27 pm

John Bleau wrote:It just might take. During my trip I saw an ad for Restless Leg Syndrome medicine. An incredibly large percentage of American TV advertizing is for drugs. Marketing can play a big role in perceived need. I've been close enough to the snakeoil bastards to know very well how they operate.
Will someone please unhypnotize John Bleau so that he doesn't believe anymore that the world revolves around pharmaceutical conspiracies? Restless leg syndrome is a real disorder (my sister has it) and BTW so is paranoid schizophrenia.

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Post by John Bleau » Sat May 27, 2006 9:37 pm

"Restless leg syndrome is a real disorder (my sister has it)" - not had it? After all, ain't there medicine for it?? Well, there's a sucker born every minute. By the way, how did your flu vaccine work out?

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Post by Ralph » Sat May 27, 2006 11:26 pm

John Bleau wrote:"Restless leg syndrome is a real disorder (my sister has it)" - not had it? After all, ain't there medicine for it?? Well, there's a sucker born every minute. By the way, how did your flu vaccine work out?
*****

A New Jersey teaching hospital is the national leader in Restless Leg Syndrome research and treatment.
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Post by jbuck919 » Sun May 28, 2006 12:09 am

Ralph wrote:

A New Jersey teaching hospital is the national leader in Restless Leg Syndrome research and treatment.
This is where your penchant for making jokes in your posts really backfires. Princeton, the only place in New Jersey that matters, has no medical school.

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Post by John Bleau » Sun May 28, 2006 6:49 am

Princeton?? Ever since they started hiring disheveled hippies with relative problems, that place went downhill.

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Post by Ralph » Sun May 28, 2006 6:58 am

jbuck919 wrote:
Ralph wrote:

A New Jersey teaching hospital is the national leader in Restless Leg Syndrome research and treatment.
This is where your penchant for making jokes in your posts really backfires. Princeton, the only place in New Jersey that matters, has no medical school.
*****

I'm not joking. The hospital is affiliated with the medical school at Newark.
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Post by Teresa B » Sun May 28, 2006 7:24 am

As John said, paranoid schizophrenia is a real disorder, and so is "Delusions of Parasitosis". If somebody wants to call that "Morgellon's" syndrome, fine--but the cause is most assuredly NOT parasites, but psychiatric.

These mind disorders are real, we just don't know the ultimate causes. We know there are abnormalities of serotonin and other neurotransmitters in some of them. There are strong genetic predispositions. But who knows, some virus could be found one of these days that triggers these psychiatric disorders in genetically susceptible individuals. We just don't know.

Teresa
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Post by Corlyss_D » Sun May 28, 2006 3:03 pm

jbuck919 wrote:Restless leg syndrome is a real disorder (my sister has it) and BTW so is paranoid schizophrenia.
I had it too for several years. It went away last year - I finally concluded that it was God's way of telling me I was under too much stress.
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Post by Ralph » Sun May 28, 2006 8:59 pm

Corlyss_D wrote:
jbuck919 wrote:Restless leg syndrome is a real disorder (my sister has it) and BTW so is paranoid schizophrenia.
I had it too for several years. It went away last year - I finally concluded that it was God's way of telling me I was under too much stress.
*****

Well, that's one explanation. :)
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Post by jbuck919 » Mon May 29, 2006 1:02 am

Ralph wrote:
Corlyss_D wrote:
jbuck919 wrote:Restless leg syndrome is a real disorder (my sister has it) and BTW so is paranoid schizophrenia.
I had it too for several years. It went away last year - I finally concluded that it was God's way of telling me I was under too much stress.
*****

Well, that's one explanation. :)
Actually, stress may have had something to do with it. Psychosomatic symptoms are very real. Corlyss is in the good company of Sister Wendy Beckett who, before she became the contemplative nun and art critic that we know, was a teaching sister in South Africa who repeatedly without success tried to get her superiors to allow her to enter a contemplative life (it seems she was too good at what she was doing). Her symptoms were epileptic seizures, which finally convinced them to let her go.

There's nothing remarkable about it. All one has to do is hit the right keys at the right time and the instrument plays itself.
-- Johann Sebastian Bach

Ralph
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Location: Paradise on Earth, New York, NY

Post by Ralph » Mon May 29, 2006 6:03 am

jbuck919 wrote:
Ralph wrote:
Corlyss_D wrote:
jbuck919 wrote:Restless leg syndrome is a real disorder (my sister has it) and BTW so is paranoid schizophrenia.
I had it too for several years. It went away last year - I finally concluded that it was God's way of telling me I was under too much stress.
*****

Well, that's one explanation. :)
Actually, stress may have had something to do with it. Psychosomatic symptoms are very real. Corlyss is in the good company of Sister Wendy Beckett who, before she became the contemplative nun and art critic that we know, was a teaching sister in South Africa who repeatedly without success tried to get her superiors to allow her to enter a contemplative life (it seems she was too good at what she was doing). Her symptoms were epileptic seizures, which finally convinced them to let her go.
*****

Yes, I was advised when I had a cold to retire. :)
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