Thursday, June 26, 2008

Man with rare disease in race against time for experimental procedure

Written by MOORE, RUSSELL J.
Thu, Jun 26 08


On a constant basis, Matthew Irving suffers from an unbearable amount of pain that civil people wouldn’t wish on their worst enemies.

In 2003, at the age of 16, Irving excelled at North Providence High School. He was an honor student who participated in the academic decathlon and Science Olympiad, was a certified lifeguard, and was on his way to earning his black belt in Karate.

A bird lover, he hoped to become a veterinarian someday.

But disaster struck when Irving underwent a basic surgical procedure to correct relatively minor problem with his foot. He was born with one leg slightly shorter than the other, and he had a procedure on one foot to correct the problem a few years prior.

Almost immediately after the surgery on his second foot, he felt something wasn’t right.

Three months later, his doctors confirmed what he already knew—something wasn’t right.

They diagnosed him with Reflex Sympathetic Dystrophy (RSD)/ (CRPS) Complex Regional Pain Syndrome which involves chronic, excruciating, burning pain, pathological changes in bone and skin, excessive sweating, skin discoloration, and extreme sensitivity to touch, light, and sound.

RSD is a debilitating and chronic syndrome, which gets progressively worse as time moves on.

RSD has a variety of treatments, all of which have had little or no positive effects on Irving.

At first, Irving dealt with the problem relatively well—though even early on he’s been confined to a wheelchair, as the act of standing became unbearable. Nevertheless, was able to attend school, and eventually received his degree.

He then went on to attend Rhode Island College, but was forced to drop out a year ago when the pain became too severe.

As time passed, his condition worsened. At this point, he’s 21, and the pain he deals with on a continual basis is excruciating.

Desperate, and with no options left in the United States, his parents, Nancy and Russell Irving, are hoping to send Matthew to Germany, just outside of Frankfurt, where he will have an experimental treatment not yet offered in the United States, because it isn’t yet approved by the FDA.

The treatment involves putting Matthew into a medically induced coma for anywhere between 5 and 19 days. The result, according to Russell Irving, Matthew’s father, will be a “rebooting” of his system. That, he said, would give Matt at least 3-5 years before the symptoms of RSD return.

In the meantime, the Irvings are hoping scientists will find better treatments, and perhaps a cure for the condition.

The problem, said Russell Irving, a programmer for the state, is that their insurance company won’t cover the costs of the trip. Similarly, the company hasn’t covered many of their son’s treatments, forcing them to pay out of pocket.

“We’ve maxed-out all of our credit cards and re-mortgaged our house three times trying to help him. At this point, I can’t produce for him anymore but what I can do is spread the word in any way possible,” said Russell Irving.

And timing has also become a very sensitive issue. The rules of supply and demand are stacked against Irving. While, relatively speaking, very few people have his type of disease, there are even fewer still specialists to treat it.

Therefore, the German hospital, which administers the treatment has a strict waiting list, and deals with logistical and time constraint issues.

At this point, Russell Irving said, the German hospital could call at any minute and ask Matthew to come to Germany for the procedure.

If the family doesn’t have $75,000 to pay for the treatment, Matthew would have to be placed on the back of the list. Irving said that would be devastating for his son—who may not live that long.

They’ve received donations of as little as $1 from individuals with notes saying “this is all I’ve got.”

Last weekend, a group of North Providence high school students hosted a car wash, which netted close to $5,000.

In sum, the family has raised over $40,000 thus far, but is still far short of their target.

“I believe in my heart we can get him to Germany. This is going to be a story about the community of Rhode Island rallying around him. If someone could see what’s inside of him they’d understand,” said Russell Irving.

“But the timing is so critical at this point,” said Irving.

“This is his only option left. He’s gone through everything he could in America, and he deserves this opportunity. He’s a young man with so much to offer.”

Those who wish to help the Irvings can do so by visiting his website There, donations can be made by online, and additional information is available on where to send donations by mail.

Click Here For The Original Article Online.


Wednesday, June 25, 2008

Bisphosphonate therapy of reflex sympathetic dystrophy syndrome

Concise reports

Bisphosphonate therapy of reflex sympathetic dystrophy syndrome S Adami,a V Fossaluzza, D Gatti,a E Fracassi,a V Bragaa

a COC di Valeggio, University of Verona, Valeggio, Verona, Italy , b Ospedale di Udine, Italy

Correspondence to: Professor S Adami, Ospedale di Valeggio,37067 Valeggio s/M, Verona, Italy.

Accepted for publication 27 November 1996

OBJECTIVE---The reflex sympathetic dystrophy syndrome (RSDS) is a painful limb disorder, for which a consistently effective treatment has not yet been identified. The disease is associated with increased bone resorption and patchy osteoporosis, which might benefit from treatment with bisphosphonates, powerful inhibitors of bone resorption.
METHODS---Twenty patients with RSDS of foot and hand, were randomly assigned to blind administration of either alendronate intravenously (Istituto Gentili, Pisa, Italy) 7.5 mg dissolved in 250 ml saline solution or placebo saline infusions daily for three days. Two weeks later all patients had an identical treatment course with open labelled alendronate (7.5 mg/day for three days), independent from the results of the first blind treatment.
RESULTS---In the patients treated with blind alendronate the diminution in spontaneous pain, tenderness, and swelling (circumference of the affected limb) and the improvement in motion were significantly different from baseline (p<0.001),> the first two weeks in the control group (p<0.01),> 2 to week 4 (p<0.01).> no relevant symptomatic changes were observed after the first two weeks of follow up, but they responded to the open alendronate therapy given afterwards. In 12 patients with RSDS of the hand the ultradistal bone mineral content (BMC) of the affected arm was considerably lower than that of the controlateral arm (mean (SD)) (426(82) mg/cm versus 688(49)). Six weeks after the beginning of the trial BMC rose by 77(12) mg/cm (p<0.001)> arm, but it did not change in the controlateral.
CONCLUSIONS---These results indicate that bisphosphonates should be considered for the treatment of RSDS, producing consistent and rapid remission of the disease.

© 1997 by Annals of the Rheumatic Diseases

Click Here For The Original Article Online.


Dawn Marie battles to help ailing sister-in-law

Dawn Marie battles to help ailing sister-in-law

Dawn Marie, her sister-in-law Carrie Deussing, Christy Hemme, and Nikolai Volkoff at Wizard World in May 2008.

Former WWE personality Dawn Marie Psaltis is looking to raise $50,000 with a Red Carpet benefit dinner to help sister-in-law Carrie Deussing, who is currently afflicted with Reflex Sympathetic Dystrophy (RSD), undergo treatment. RSD is a progressive nerve disorder that attacks the central nervous system.

The benefit is scheduled for September 14 at the Holiday Inn in Edison, New Jersey, featuring many guest appearances from the wrestling community.

"I'm really looking forward to doing the RSD foundation because I've been so far removed for so long," Dawn Marie told SLAM! Wrestling in a phone interview from her home in Edison. "I'm actually looking forward to hanging out with them and just having some fun, and also thanking them."

RSD produces chronic and extreme amounts of sharp burning pain which feels like standing in the middle of a raging inferno. An extreme sensitivity to touch, a condition called Allodynia is usually present as well, which makes the slightest touch, sharp sound, clothing or breeze trigger the pain sensations.

It is why Deussing calls the process of recovery "taming the flame."

The symptoms can include inflammation, spasm in the blood vessels and muscles of the extremities, back or torso, and insomnia or emotional disturbance.

There is no known cure for RSD.

Speaking with SLAM! Wrestling on the phone from her home in Plymouth Meeting, Pennsylvania, the personable Deussing, 31, explained how her life was turned upside down after returning from an Aruba vacation in July 2007. "I started experiencing some symptoms on the left side of my body, in my torso area. We weren't really sure what they were, and they looked me up for kidney stones and that came up negative and the symptoms spread down my left leg. The symptoms were a burning ravishing pain which felt like being stung by thousands of bees at the same time. Then it went up my left arm and then my co-workers decided to take me to the hospital.

Carrie Deussing before being afflicted with RSD.
"I'm progressively getting worse every day. I cannot walk without assistance," she continued. "I have a wheelchair; I'm waiting to get a motorized one and just cannot do the things I used to do around the house.

"I was a workaholic. I loved my job and worked all the time. Probably too much. I worked for a medical management company. I was always connected to the office through my laptop."

Deussing was diagnosed initially by Dr. Philip Getson and confirmed by Dr. Robert Schwartzman, Professor and Chairman of Drexel University College of Medicine, Department of Neurology in September of 2007. Upon further evaluation, he recommended an experimental treatment called the Ketamine coma. The patient, in a coma state, is administered a high dosage of Ketamine, a horse tranquilizer. The most advanced cases are referred to Germany because Ketamine is a class-3 drug in the U.S., with only low dosages legally allowed.

However even in Germany, there is a waiting list for treatment that extends to 2010.

Deussing plans to travel to Monterrey, Mexico to undergo an alternative treatment program pioneered by Dr. Anthony Kirkpatrick.

According to information on Deussing's RSD Foundation website, the treatment "resets the link between the pain sensory neurons and the brain. The coma calms the nervous system and 'reboots' the patient, much like a computer. After the fifth day, they slowly wake me up. The goal is to wake up pain free."

Fortunately in Deussing's case, the disease was caught early, significantly increasing her chances for recovery. The tentative day for treatment is July 17.

"My expected length of stay should be about 2-1/2 weeks if there are no major complications," Deussing said.

Carrie and husband Arthur in December 2006.
After some physical therapy and the occasional IV Ketamine infusion, Deussing can resume living a life that many people take for granted.

"I'm going to find some hobbies," she said confidently. "I'm going to continue this foundation and when I don't need the funds, I plan on giving it to other people that need the funds, raising awareness because this disease is not well known. People need to learn about it, and there are a lot of people out there that have it that need funds."

"I've had fans that have donated $500 and fans that donated $1," Dawn Marie said. "Not one is more exciting to receive than the other. Just to have someone care enough about my family and help us is just wonderful. If every fan donated just 50 cents, we would be so much closer to our goal. It doesn't have to be a large donation. People feel, 'I can only donate a dollar; I can only donate two dollars.' Trust me, it's sorely needed.

"If I had the money, I would give it to her, but I have been out of work for so long now it's impossible," said the former ECW and WWE Diva. "I mean I've given her a few bucks, but nowhere near what she needs. This is all I can do to contribute at this point."

Dawn Marie in May 2008.
Along with Deussing's resolve, RSD has failed to conquer her love of professional wrestling. "Back in Dawn's days is when I was really into it," she said with a laugh. "It's kind of addictive. You put it on, you start watching it, and you want to watch the next episode. Now I watch it every so often."

Asked to comment on her sister-in law's efforts, Deussing was unable to suppress the emotion in her voice. "Dawn has been absolutely amazing," she gushed. "She has been so helpful through all of this.

She also acknowledged TNA's Christy Hemme who was at the May 2008 Wizard World convention. "Christy was in the booth next to us; she was so nice and assisted with crowd control and made sure that no one bumped my wheelchair when it got crowded since something as simple as that causes me severe pain. She gave me an autographed picture and was just great," said Deussing. As of this week, approximately $31,000 has been raised so far through donations and previous fundraising events.

EDITOR'S NOTE: If you would like to help Carrie Deussing, tax-deductible donations can be made to: The Carrie Deussing RSD Foundation, Commerce Bank, 601 College Drive, Blackwood, NJ, 08012

Donations can also be made through the Carrie Deussing RSD Foundation website

Click Here For The Original Article Online.


Feel the pain and do it anyway

Feel the pain and do it anyway

Maxine Pye draws on her own experiences to help people cope. Photo / Graeme Sedal

Maxine Pye draws on her own experiences to help people cope. Photo / Graeme Sedal

Maxine Pye's experience of excruciating pain led to a new career helping others cope with it and death.

Now 44 and the family support team leader at North Shore Hospice Trust, Pye has lived with complex regional pain syndrome (CRPS) since 1996. Overnight, the upper left side of her body was paralysed. Back then, she didn't know what caused it but now she puts it down to an acupuncture needle hitting a nerve.

Pye's husband, Phillip Howe, became her caregiver. She could not work for two years as they adjusted to her condition.

She spent many hours contemplating the past and future. That sort of contemplation is something the patients at the trust's hospice can identify with.

The trust is a not-for-profit organisation providing up to 10 in-patient beds for people who need 24/7 respite care, or help with symptom management, or who are terminally ill and choose to die at the hospice. It is a palliative care provider for the Waitemata District Health Board.

"My dad died the day before my 19th birthday in July, 26 years ago," Pye says. "Back then, there was no hospice around.

"After his death, I asked if I could join the Cancer Society as a volunteer. At that time, they had a two-year step-down period (after experiencing the death of a loved one) and I was only 19, so they were concerned about that."

In those two years of waiting, Pye travelled and her wish to work with the society or something to do with illness and grief was overtaken by corporate life.

She became an office manager. Nonetheless, "I could still always feel the disease and death thing pulling me."

After her experience, Pye needed help washing and dressing as well as special equipment to cope with everyday tasks such as cooking.

"Living in pain is exhausting and it took up a lot of the day, trying to work through that pain."

The loss of independence hit her hard. "Being the positive person that I am, I thought that it is my opportunity to do something along the counselling line and in the grief area," she says.

But she could not sit or concentrate for long as she was having pain spasms. Pye did a six-month course in community studies over two years at AUT's Akorangi campus.

"While I was doing that I came to the hospice to start volunteering in 1999. I wanted to see if that was really the area in which I wanted to go in my career."

From there, and with the hospice counsellor's help, Pye enrolled at Unitec for the three-year, full-time course Bachelor of Social Practice, majoring in counselling.

"Because of my condition, I couldn't do it over three years. I did it part-time over four."

She graduated with a diploma of social work and a degree in counselling and, in September 2004, began work as a counsellor/social worker at the hospice.

Pye is convinced the accident brought an inevitable career change forward.

"If I hadn't had my accident, I don't know if I would have got here as soon as I have, but I think I would have eventually got here, because I love it."

Turning 40 often helps people re-evaluate their lives, she says. "The accident forced me and my husband to do that earlier than the natural scheme of things.

"I live in constant pain but, because of medication and the wonderful pain clinic at Auckland Hospital, I have techniques within me so I can control it. I never dreamed that I would be back to doing five days a week and loving it."

While many people may regard those who work in palliative care as especially caring individuals, Pye believes it takes special people to do whatever job they are doing.

"I could not be a palliative nurse, those girls are amazing. Nursing is about getting somebody better, while our nurses are making their patients as comfortable as they can in a physical space.

"I love talking and listening, so I am better in my role."

The hardest part of Pye's job is if a family asks her to sit with them when a family member is dying.

But the best thing is hearing people's stories.

"For me, I feel extremely privileged and humbled that people share their stories at this time in their lives and allow me to do my job.

"It never ceases to amaze me how we are welcomed into their lives.

"A lot of people at this time can stop communicating within their family. We can go and help reopen that again. People just need to offload and talk about what is going on for them, if they are the one that is dying or surviving, especially the ones that are surviving, how they are going to survive and adjust with their loved one not there.

"On the social work side, finance can be a big issue, especially if one has to give up work. It's about helping them network to the right agency or group, network back to their community. At times like this, people can forget who is around there for them and it is part of our job to help them open it up again and help them see that."

Self care is an integral part of Pye's role.

"You have to be a type of person who is really on to the self-care when you are surrounded by death and dying."

Plus, she has the challenge of coping with her own constant pain.

"I really try to enjoy life. As you walk in here every day, it is a constant reminder."

She loves four-wheel-driving, boating and fishing, plus cooking, drinking and enjoying good company.

This week is National Volunteer Awareness Week.
For more information, see

Click Here For The Original Article Online.


Musicians band together to help ill stage tech

Supporting acts

Musicians band together to help ill stage tech


This project has the seeds to grow.

So says Howard Mandshein, director (and Friday night emcee) of the Musicians Help Project, capturing the vision, the optimism and the need for a non-profit group that can assist local musicians, crew members and roadies with temporary support for their health related issues.

The Musicians Help Project kicks off tomorrow at the Garrick Centre, featuring a Who's Who of the Manitoba music scene: Harlequin, Kenny Shields (Streetheart), the Pumps/Orphan, and Greg Leskiw (Swing Soniq, Kilowatt, Mood Jga Jga, and the Guess Who) have all represented 'Peg City on the world stage.

"I had the idea for years," says founder George Belanger of Harlequin, "but things happen for a reason and a friend in need is a friend indeed. So I said, 'Let's do it!' "

That friend is stage technician Blair Webber, who was diagnosed in 2004 with Complex Regional Pain Syndrome. The rare nerve disease has left Webber in constant pain, has no known cure or treatment, and makes everyday tasks difficult. The three-and-a-half-year ordeal continues to drain his savings, with mountains of medications and weekly hospital visits being the only means of managing the pain.

Doing what friends do in Winnipeg, Belanger picked up his little black book . "It was so easy," he says of the level of co-operation. "The music community always responds immediately."

Manitobans, according to the Fraser Institute report, are the most charitable Canadians on record, and Belanger says he's humbled by their spirit of giving as he reads a shopping list of donors.

"All they want to know is how can they help. And it comes from the goodness of their heart," he says.

Mandshein, who hosts a weekly live music showcase at Mona Lisa Ristorante, shares a similar experience.

"People always come up to me (and ask), 'Do you know so-and-so? They need help?' Any time that happens, nine out 10 musicians just ask, 'When and where and what do you need?' And they don't know these people! What does that tell you?"

Kevin Donnelly, senior VP at True North, quickly stepped up to the plate with a boatload of prizes. He also brought along heavy-hitting "friends" Ticketmaster and Centerplate to provide tickets and concessions.

"I have known Blair for a long time -- both personally and professionally -- and know Blair to be a salt-of-the earth, solid guy," says Donnelly. "As someone who has family in the music business, I am aware of the lack of a formal safety net."

Musicians are among the estimated 70,000 self-employed in Manitoba, many of whom are often unable to afford insurance. And even with over 700 members, the Manitoba Audio Recording Industry Association still finds medical coverage doesn't come easy.

"We did investigate a group medical plan," explains Sean McManus, volunteer co-ordinator with MARIA. "But we were not able to find a plan that was both effective and affordable for the members."

Doors at the Garrick open at 6 p.m. tomorrow, with music set to get underway two hours later.

For more info, see


Musicians Help Project

Where: Garrick Centre

When: Fri., June 20

With: Harlequin, Kenny Shields, The Pumps/Orphan, Greg Leskiw

Tickets: $30 @ Ticketmaster; admission $40

Click Here For The Original Article Online.


Tuesday, June 24, 2008

Swiss study in mice may lead to new pain drugs

Swiss study in mice may lead to new pain drugs

Wed Jan 16, 2008 2:49pm EST
17 Jun 2008

By Julie Steenhuysen

CHICAGO (Reuters) - Enhancing a natural pain-filtering mechanism in the spine helped relieve chronic pain in mice without the unwanted side effects of current pain relievers, Swiss researchers said on Wednesday.

They honed in on a specific molecule that helps prevent chronic pain signals from reaching the brain, without blocking normal pain messages that alert people to danger.

And they said their experiments in mice may point the way to better drugs in humans.

"Our approach addresses primarily chronic pain," said Hanns Zeilhofer of the University of Zurich in an e-mail.

He said analgesics such as aspirin can cause stomach ulcers, while opioids such as morphine make patients sleepy and are addictive.

Zielhofer's idea was to find a way to trick the body into intercepting pain signals before they cause havoc in the brain.

"We know that normally the spinal cord acts as filter for pain signals. It prevents most of the pain signals from reaching the brain, where pain becomes conscious," said Zeilhofer, whose study appears in the journal Nature.

Zeilhofer's team focused on a molecule called GABA that that can inhibit pain signals.

A class of drugs called benzodiazepines, which include diazepam -- better known as Valium -- bolsters the action of this GABA molecule in the central nervous system. The drugs are used to treat things like anxiety and insomnia, but when injected near the spine, these drugs also relieve pain.

"Problem is, they must not be used in chronic pain patients because of undesired effects that they have in the brain," Zeilhofer said in an e-mail. "They make patients sleepy, they impair memory and can cause addiction."

But benzodiazepines target at least four different GABA receptors that mediate pain control.

"These receptors turned out to be predominately present in the spinal cord and occur in the brain at much less density," he said. By targeting just two of the GABA spinal receptors, they might be able to make a drug that could be used for chronic pain without losing potency or making people sleepy.

To test this, the researchers used genetically engineered mice to target only the GABA receptors in the spine. Then they irritated nerves in the paws of mice, making them more sensitive to touch and measured how fast the mice pulled away when gently touched.

"When we treated the mice with the right drugs, their sensitivity to this touch became normal again," Zeilhofer said. And it worked without unwanted sedation or impaired motor function.

"Normal pain, however, was retained. This is important because normal pain has a protective function as it warns us of tissue damage," he said.

They also used brain scans on rats to see how the drugs worked in certain pain centers that control both the sensation of pain and the feelings of anxiety that pain can produce. The scans showed the drugs reduced pain in these brain regions.

Zeilhofer said the study showed that targeting specific GABA receptors may provide a promising new target for drug development. "The next big challenge will be to develop drugs which work in humans," he said.

(Editing by Maggie Fox and Cynthia Osterman)

Click Here For The Original Article Online.


Complex regional pain syndrome 1 - the Swiss cohort study

Study protocol

Complex regional pain syndrome 1 - the Swiss cohort study

Florian Brunner email, Lucas M Bachmann email, Ulrich Weber email, Alfons GH Kessels email, Roberto SGM Perez email, Johan Marinus email and Rudolf Kissling email

BMC Musculoskeletal Disorders 2008, 9:92doi:10.1186/1471-2474-9-92

Published: 23 June 2008

Abstract (provisional)


Little is known about the course of Complex Regional Pain Syndrome 1 and potential factors influencing the course of this disorder over time. The goal of this study is a) to set up a database with patients suffering from suspected CRPS 1 in an initial stadium, b) to perform investigations on epidemiology, diagnosis, prognosis, and socioeconomics within the database and c) to develop a prognostic risk assessment tool for patients with CRPS 1 taking into account symptomatology and specific therapies.


Prospective cohort study. Patients suffering from a painful swelling of the hand or foot which appeared within 8 weeks after a trauma or a surgery and which cannot be explained by conditions that would otherwise account for the degree of pain and dysfunction will be included. In accordance with the recommendations of International Classification of Functioning, Disability and Health (ICF model), standardised and validated questionnaires will be used. Patients will be monitored over a period of 2 years at 6 scheduled visits (0 and 6 weeks, 3, 6, 12, and 24 months). Each visit involves a physical examination, registration of therapeutic interventions, and completion of the various study questionnaires. Outcomes involve changes in health status, quality of life and costs/utility.


This paper describes the rationale and design of patients with CRPS 1. Ideally, potential risk factors may be identified at an early stage in order to initiate an early and adequate treatment in patients with increased risk for delayed recovery.

Click Here For The Original Article Online.

Click Here for the full study (PDF)


Saturday, June 21, 2008

Risky treatment moves Windsor Locks woman toward normal life

Risky treatment moves Windsor Locks woman toward normal life

By Matthew Engelhardt
Journal Inquirer
Published: Monday, June 16, 2008 11:17 AM EDT
WINDSOR LOCKS — James Remotti was never so happy to get kicked in the rear end as he was back in April.

When he realized who delivered the “well-deserved” strike — after turning to see his sister Mary, 19, smiling and laughing in her wheelchair — he was overjoyed.

This was much more than just normal brother-sister shenanigans. The kick was a sign that Mary was getting better and the sister James remembered was back to her old self.

“I can move my legs again,” Mary said last week, demonstrating her newfound dexterity as she swung her feet back and forth.

The improvement in Mary’s condition, Reflex Sympathetic Dystrophy Syndrome, has been a blessing for her and the Remotti family.

She was diagnosed with the rare affliction in 2005 after enduring countless tests and misdiagnoses.

RSD was causing her nerves to misfire and interpret anything that touched her as pain, even the sensations created by clothing or drops of water against her skin.

Mary persevered through the initial diagnosis, even though none of her treatments was relieving her pain. She managed to graduate from Windsor Locks High School, but her condition worsened to the point where she was bedridden in her family’s living room.

Blankets caused her pain, so to keep her warm, Mary’s family would drape linens from pipes attached to the bed.

Every day, Mary risked spasms and other complications that could have led to a hospital stay or worse.

Treatment induced coma

There was only one hope left for Mary: a controversial treatment using ketamine, a powerful anesthetic used in humans and animals.

The treatment is used in extreme cases of RSD. Patients are put into a coma with ketamine to essentially reboot their brains. After coming out of the coma and enduring months of rehabilitation, patients reported that their pain had subsided and their lives could get back to normal.

However, compassionate use of ketamine is illegal in the United States. Its psychedelic side effects make it a popular recreational drug known as “Special K.”

Mary went to Florida to see an RSD specialist, who introduced the Remottis to the idea of undergoing the coma treatment in Mexico, where it is legal.

The prospect gave the family hope, but they were working both against the disease’s spread over Mary’s body and the large price tag of the treatment.

The family established Mary’s Wish, a Web site that helped them inform the public of Mary’s battle and solicit donations to cover the approximate $200,000 needed for the treatment and rehabilitation. Through dinners, a car raffle, and an outpouring of community support, the Remottis raised enough to at least get Mary to Mexico and undergo the treatment.

The Web site and stories publicizing Mary’s story had another effect. Other patients and families struggling through RSD were finding inspiration in her battle.

“They used Mary as their light,” James Remotti said. “A lot of the same things that helped her are helping them.”

Relief not immediate

Mary arrived in Monterey, Mexico, in early January, and it was almost too late to save her. Her internal organs had started to fail and she could no longer move.

“By the time we left” for Mexico, “I couldn’t move my mouth any more,” she said.

Doctors induced the coma, and Mary stayed under for five days. She awoke bewildered as well as scared because she didn’t feel the instant relief for which she had prayed.

Over time, she improved. The pain dissipated, and though there were a few setbacks requiring “ketamine boosters,” Mary began to distinguish the RSD pain from the injuries caused by years of being bedridden.

By February, she was allowed to leave the hospital bed. Just as importantly, she could fulfill a wish she had all along: her family could hug her and hold her hand without it causing her pain.

“It’s a relief, a miracle, an answer to all the prayers offered for her,” Margaret Remotti, Mary’s mother, said. “The biggest thing is seeing the big smiles on her face and hearing her say that it doesn’t hurt.”

By April, Mary was allowed to return home to Windsor Locks, where she can once again care for herself, feed her pets, clean up her room, and, yes, fight with her siblings.

“I can wear clothes again,” Mary said. “No more tent bed.”

‘It doesn’t hurt!’

After years in bed, her muscles had atrophied, and now she is slowly building the strength to stand. She gets into the pool twice a week and can put weight on her right leg and hop around a bit.

Mary is not completely healed and her family says that there is no complete cure for RSD. Still, each day that goes by, she gets a little stronger and closer to accomplishing other long-term goals, such as getting certified as an emergency medical technician and pursuing a college degree.

“The first time she went back out into the rain, she was so excited,” Margaret Remotti said. “She yelled, ‘it doesn’t hurt! It doesn’t hurt!”

Mary said her family and friends have been wonderful with their support and that those that haven’t seen her in a while are shocked and amazed to see her improvement.

“I don’t have that fear of ‘what if somebody touches me?’ Mary said.

There are still plenty of medical bills to pay. The family continues to organize events to help foot the costs and is selling Mary’s Wish T-shirts to help.

Moreover, James said, he hopes to establish Mary’s Wish as a nonprofit to help others with RSD.

For more information or to read about Mary’s experience in her own words, visit

Click Here For The Original Article Online.


Hilary Lister slips her lines in Dover

Hilary Lister slips her lines in Dover

At 36, Hilary Lister suffers from a rare disorder known as reflex sympathetic dystrophy. This 'genetic blip' means she has no movement in her arms or legs. The only thing she can move is her head.

She has broken records, won awards and become a figurehead for disabled people because she is a fearsome sailor. In 2005 she became the first quadriplegic to sail single-handedly across the Channel. Two years later she repeated the feat sailing round the Isle of Wight. Now, it's the British Isles.

Hilary plans on sailing her Artemis 20 sailboat around the isles in legs, stopping each night in ports along the way: "We'll be going clockwise around. We're up against wind and tides, for the whole of the south coast, but at least when we get to the North Sea we should get swept back home - which is a good thing," said Hilary of her planned route.

Hilary Lister told reporters she was feeling confident as she set sail on Monday afternoon under bright sunny skies: "We've broken everything that can be broken and everything that could have gone wrong has gone wrong, so we've got to be OK now," she added.

Having set sail from Dover in the afternoon, Hilary Lister arrived safely in Eastbourne Marina tired but happy to have successfully completed the first leg of her journey. The challenge for this journey will be to stay focused and determined, as Hilary is scheduled to be sailing up to 16 hours a day for the next three months. Last night Hilary arrived safely in Brighton.

Press Report/Yachting World, 18 June 2008

Click Here For The Original Article Online.


Monday, June 16, 2008

Petition for RSD Awareness Day

Petition for RSD Awareness Day, publisher of neurologychannel is hosting a petition to raise awareness for RSD and advocate for a Nationally Recognized Reflex Sympathetic Dystrophy (RSD) Awareness Day.


Create a National Health Observance Day to raise public awareness for the millions of people and their loved ones who are affected by RSD.


Reflex sympathetic dystrophy (RSD) or complex regional pain syndrome (CRPS), is a chronic, painful, and progressive neurological condition that affects skin, muscles, joints, and bones. The syndrome usually develops in an injured limb, such as a broken leg, or following surgery. However, many cases of RSD involve only a minor injury, such as a sprain. And in some cases, no precipitating event can be identified.

Millions of people in the United States may suffer from this chronic pain syndrome. RSD/CRPS affects both men and women, and also occurs in children.

RSD/CRPS can be difficult to diagnose and often requires excluding other conditions that produce similar symptoms.

RSD/CRPS patients often become depressed and anxious because of chronic pain and loss of physical ability.

For more information on Reflex Sympathetic Dystrophy (RSD/CRPS), please visit

To read stories submitted by others affected by RSD visit,

Sign the Petition to Congress

To help promote our efforts and advocate for an RSD Awareness Day, please fill out the following form. The petition is open to U.S. residents 18 and older. All fields are required to act as your digital signature.

Click here for original site page and to add your name to the petition!


H. Con. Res. 159: Expressing the support of Congress for a National Complex Regional Pain Syndrome and Reflex Sympathetic Dystrophy Awareness Month

Legislation > 2007-2008 (110th Congress)
H. Con. Res. 159: Expressing the support of Congress for a National Complex Regional Pain Syndrome and Reflex Sympathetic Dystrophy Awareness Month

Articles About This Bill

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Bill Text:
Summaries (CRS)
Occurred: IntroducedMay 24, 2007
Not Yet Occurred: Scheduled for Debate-
Not Yet Occurred: Voted on in House-
Not Yet Occurred: Voted on in Senate-
This bill is in the first step in the legislative process. Introduced bills go first to committees that deliberate, investigate, and revise them before they go to general debate. The majority of bills never make it out of committee. Keep in mind that sometimes the text of one bill is incorporated into another bill, and in those cases the original bill, as it would appear here, would seem to be abandoned. [Last Updated: Jun 14, 2008]
Last Action:
May 24, 2007: Referred to the Subcommittee on Health.

Committee Assignments

This bill is in the first stage of the legislative process where the bill is considered in committee and may undergo significant changes in markup sessions. The bill has been referred to the following committees:

Wednesday, June 04, 2008

Prevalence of complex regional pain syndrome in a cohort of multiple sclerosis patients.


: Pain Physician. 2008 Mar-Apr;11(2):133-6.

Prevalence of complex regional pain syndrome in a cohort of multiple sclerosis patients.

Schwartzman RJ, Gurusinghe C, Gracely E.

Drexel University College of Medicine, Department of Neurology, Philadelphia, PA, USA.

BACKGROUND: More than 50% of multiple sclerosis patients experience chronic pain syndrome. We set out to determine the specific type of chronic pain that was seen in our multiple sclerosis patients.

METHODS: Patients with multiple sclerosis were catalogued between January 2002 and April 2006 and identified by a search of the database. Only MS patients that met the 2005 revised McDonald criteria were included. RESULTS: We determined the prevalence rate of complex regional pain syndrome in a cohort of multiple sclerosis patients. In our sample of 205 multiple sclerosis patients, the prevalence of complex regional pain syndrome was 4 cases per 205 compared to an expected age and sex-adjusted total prevalence of 0.078 cases per 205 (p <>

CONCLUSION: This study suggests that multiple sclerosis patients are at a higher risk of developing complex regional pain syndrome than the general population.