IVCC/CCSVI, liens et articles de ce mercredi.

Publié le par Handi@dy

Barre google de traduction indispensable!

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"Harry Potter" author J.K. Rowling has donated 10 million pounds ($15.5 million) to set up a new clinic to carry out research into multiple sclerosis (MS), the disease which killed her mother.

644898240-harry-potter-author-j-k-rowlin Harry Potter author J.K. Rowling reads at the annual Easter Egg Roll on the South Lawn of …

The clinic, based at the University of Edinburgh in Scotland, will be named after Rowling's mother Anne and the author said she hoped it would become a world centre for excellence into neurological conditions.

"I have just turned 45, the age at which my mother, Anne, died of complications related to her MS," Rowling said in a statement on Tuesday.

"I know that she would rather have had her name on this clinic than on any statue, flower garden or commemorative plaque, so this donation is on her behalf, too; and in gratitude for everything she gave me in her far-too-short life."

The donation is the largest made by the author, whose wealth is estimated at more than 500 million pounds thanks to the global success of the seven boy wizard books, and the biggest single donation the university has received.

"This exceptionally generous donation will provide great help in the worldwide effort to improve treatments for multiple sclerosis," said Professor Timothy O'Shea, Principal of the University of Edinburgh.

The Anne Rowling Regenerative Neurology Clinic follows the setting up of the Centre for Multiple Sclerosis Research at Rowling's home town of Edinburgh which she also supported.

The new centre will also look into other degenerative conditions such as Alzheimer's disease, Parkinson's disease and Huntingdon's disease, which like MS are progressive and incurable.

There are around 100,000 MS sufferers in Britain, while Scotland has one of the highest rates in the world.

"I cannot think of anything more important, or of more lasting value, than to help the university attract world-class minds in the field on neuroregeneration, to build on its long and illustrious history of medical research and, ultimately, to seek a cure for a very Scottish disease," Rowling said.

(Reporting by Michael Holden; Editing by Steve Addison)"

Is chronic fatigue the symptom of venous insufficiency associated with multiple sclerosis? A longitudinal pilot study.

 *Latest MS News

* Environmental Factors And MS Research

*"

par ms-ccsvi-uk, mardi 31 août 2010, à 10:28

EUROMEDIC Specialist Clinics, Department of Vascular & Endovascular Surgery, Katowice; Poland

 

June 15, 2010

 

To the Canadian Parliamentary Subcommittee on Neurological Diseases

 

I represent the centre that I believe has performed the largest number of endovascular treatments for chronic cerebrospinal venous insufficiency (CCSVI) in the world. Although we only began those treatments in October 2009, we currently perform about 20 procedures per week, and total number of people who have been treated is now around 400. It is important to point out that the interventions for CCSVI in our Department have been approved by the Bioethical Committee of the Regional Silesian Board of Physicians in Katowice, Poland. Because we collect all data regarding patients’ history, clinical status and the characteristics of the venous lesions that have been diagnosed, the analysis of this dataset has enabled us to draw some conclusions regarding links between CCSVI and multiple sclerosis.

 

First, CCSVI has been found to highly correlate with multiple sclerosis. Only 3% of the MS patients we have seen were not diagnosed with CCSVI (using color Doppler sonography, magnetic resonance venography and standard intraoperative venography).

 

Second, localisation and severity of venous lesions have been found to significantly affect the clinical course of MS. For example, injury to the optic nerves were found more often in the cases with unilateral lesions in the internal jugular vein, while bilateral stenoses in the internal jugular veins correlated with a less frequent ocular pathology. More disabled MS patients were found to suffer from bilateral and/or severe occlusions of the internal jugular veins and the patients with stenosed azygous vein presented with the most aggressive clinical course of MS. These findings, in addition to preliminary observations that a substantial percentage of MS patients improved after endovascular interventions for CCSVI, favour the idea that surgical treatments for those venous obstacles should be an important part of the management of MS.

 

The most important question regarding treatments for CCSVI, however, regards the safety of such a management of venous outflow blockages. Such a management strategy is actually recommended by the Consensus Document of the International Union of Phlebology for the diagnosis and treatment of venous malformations. However, although similar endovascular procedures for the treatment of other venous pathologies are known to carry very low risk, an actual rate of complications related to such treatments for CCSVI remains undetermined, mainly because these procedures are not yet routinely performed in these cases. Moreover, recently in some neurological papers it has been claimed that surgical treatment for CCSVI can be dangerous. Interestingly, these statements were based only of the beliefs of the authors, and not on the body of evidence. Contrary to those opinions, in our clinic we have demonstrated that these procedures are safe and usually well-tolerated by the patients.

 

In brief, 347 CCSVI patients with associated multiple sclerosis have undergone a total of 587 endovascular procedures: 414 balloon angioplasties and 173 stent implantations were performed during 361 interventions. There were only few, rather minor and occasional complications or technical problems related to the procedures. These included: i. life threatening complications: death - 0, major hemorrhage – 0; cerebral stroke – 0; stent migration - 0; ii. major complications: early stent thrombosis – 2 (1.2%); postoperative false aneurysm in the groin – 2 (0.6%); surgical procedure (opening of femoral vein) to remove angioplastic balloon – 1 (0.3%); injury to the nerves - 0; iii. minor complications: transient cardiac arrhythmia – 2 (0.6%); minor bleeding from the groin - 2 (0.6%); minor gastrointestinal bleeding – 1 (0.3%); postprocedural lymphatic cyst in the groin – 1 (0.3%); problems with the removal of angioplastic balloon or delivery system – 5 (0.9%).

 

Therefore, in our opinion, precise preoperative diagnostics and selective use of the stents (if balloon angioplasty was not successful) can make the endovascular management of CCSVI free of significant complications and, in terms of restoring the proper venous outflow, more efficacious than performing balloon angioplasty in all cases. However, the actual impact of the endovascular treatments for venous pathology on the clinical course of multiple sclerosis warrants more clinical studies and long term follow-ups."

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Wheelchair Kamikaze, mise à jour

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par CCSVI in MS Toronto, mardi 31 août 2010, à 07:55
45179_428567400317_268097155317_5527050_

 

Rationale for the Preliminary Evidence Examination

 

A review on the effectiveness and safety of imaging investigations and treatment of chronic cerebrospinal venous insufficiency (CCSVI) in patients with multiple sclerosis (MS) was requested by the Ministry of Health and Long-Term Care. A preliminary evidence examination was made by the Medical Advisory Secretariat (MAS) in order to determine whether there was sufficient evidence to conduct a full evidence- based review on CCSVI in MS patients.

 

Recent reports in the scientific and medical community and the media have led to great interest in a novel approach in the management of multiple sclerosis.

 

 

The Medical Advisory Secretariat

Ministry of Health and Long-Term Care

20 Dundas Street West, 10th floor

Toronto, Ontario

CANADA

M5G 2C2

 

 

Email: MASinfo.moh@ontario.ca

Telephone: 416 314 1092

 

 

Medical Advisory Secretariat

Ministry of Health and Long-Term Care Report:

http://www.health.gov.on.ca/english/providers/program/mas/tech/rapid/pdf/rr_ccsvi_20100611.pdf"

*Interventional Endovascular Management
of Chronic Cerebrospinal Venous
Insufficiency in Patients with Multiple
Sclerosis: A Position Statement by the Society
of Interventional Radiology, Endorsed by the
Canadian Interventional Radiology Association

*

Some Notes on Rehabilitation after CCSVI Treatment for MS

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CIHR makes recommendations on Canadian MS research priorities

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Holding out hope

Perry Goodyear of Grand Bank in 2006 after piecing together a motor bike and a small car to help with his mobility following diagnosis with Multiple Sclerosis (MS). Carl Rose Photo Carl Rose Photo

Perry Goodyear of Grand Bank in 2006 after piecing together a motor bike and a small car to help with his mobility following diagnosis with Multiple Sclerosis (MS). Carl Rose Photo

Published on August 30th, 2010
Published on August 30th, 2010
Paul Herridge
  

Grand Bank resident scheduled for MS ‘liberation treatment’ in U.S.

Perry Goodyear estimated there’s only been two days in the past two months that he hasn’t been sick. Last Wednesday, when the Grand Bank resident spoke to The Southern Gazette, was one of them.

 

Perry Goodyear estimated there’s only been two days in the past two months that he hasn’t been sick.

Last Wednesday, when the Grand Bank resident spoke to The Southern Gazette, was one of them.

The 37-year-old, who was diagnosed with multiple sclerosis or MS in 2003, has watched the disease steadily progress since then.

First, his leg wouldn’t bend and he walked with a limp. Soon, he required a cane, then a walker and now a motorized scooter.

He has the Primary Progressive form of MS, which affects between 10 and 15 per cent of people with the disease.

“That’s my mobility. That’s all I got now. I got one arm that functions at about 50 per cent. I haven’t got a whole lot left.”

One thing the former mechanic, who is married with one daughter, does have though is hope.

It comes in the form a new theory by Italian researcher Dr. Paolo Zamboni, who believes MS is connected to a vascular disease he calls ‘chronic cerebrospinal venous insufficiency’, or CCSVI. He has suggested it can be treated by an angioplasty-type surgery on veins in the neck.

MS has been generally thought by many to be an autoimmune disorder, up until research in recent years.

The ‘liberation treatment’ – as it has been dubbed, though, has not been approved as an option for MS patients in Canada thus far. This has forced many people with the disease in this country to seek out the surgery elsewhere, including Poland and the United States.

Mr. Goodyear is headed to the U.S. this October for the procedure. He has been asked not to reveal where, to avoid flooding the facility with requests. He also applied to Poland earlier this year, but has not had a response.

He learned about the facility in the United States through a Facebook friend with MS in Ontario, who recently had the surgery performed there. He applied and had the October appointment lined up within a couple months.

“She’s doing marvelous. She’s hoping that she’s going to be back to work in the new year.”

It’s hard not to get excited when you hear about some of the stories of people who have had the procedure.

“It’s unreal the results. There’s one woman in Ontario, who never hugged her daughter in 16 or 18 years. Now she can stand up and give her daughter a hug without falling down.

“She’s cooked a full meal for her husband and daughter. She doesn’t get tired. No more fatigue. No more headaches.”

Mr. Goodyear acknowledged he has received tremendous support from around the Burin Peninsula.

An eight-person committee in Grand Bank has been formed to raise the estimated $20,000 to $25,000 needed to cover the surgery and associated costs. He indicated approximately $7,000 has been raised so far.

The next event is a soup and sandwich luncheon at the Grand Bank Lions Centre Sept. 11.

“I’ve been fortunate because I thought I was going to have to get a bank loan or re-mortgage the house. It’s looking pretty good now. I think they will get enough money.”

The provincial government had been hesitant to provide funding for clinical trials in this country for the treatment, up until recently.

Health Minister Jerome Kennedy acknowledged the province’s position had changed last week. He said a decision whether the surgery will be covered under MCP will be made after the trials are finished.

“I know it’s not going to get no better, so I’m just hoping now that this surgery will do something. That’s all I got left.” - – Perry Goodyear

Interim Liberal leader Kelvin Parsons said he is encouraged government had at least made a commitment to help fund clinical trials.

“I think it is important government has acknowledged it has a role to play in furthering research on this treatment, which is viewed by many MS sufferers as a hopeful alternative to improve their quality of life.”

Several CCSVI studies are already underway or set to begin shortly in Canada, but the results will take time.

That’s something Mr. Goodyear said he doesn’t have much of left – the disease has progressed severely in the past two years.

“I know it’s not going to get no better, so I’m just hoping now that this surgery will do something. That’s all I got left.”

Given his current condition, he anticipates the journey to the United States will be a rough one, but also worth it if he can get even a piece of his life back.

“My main thing, if I can get rid of the pain and suffering, it’d be 100 per cent for me. To be able to use a bit of function in my left arm would be nice. I haven’t used it in two years. The fatigue is terrible and the headaches.

“I’m not looking to jump up and run across the floor – just a little better quality of life. If I can get that back, it would be nice. To be able to do a little bit of something for yourself would be nice."

*

Alzheimer's, Parkinson's and Multiple Sclerosis

*

Experts advise against clinical trials for MS treatment (site médical financé par labos)

*MS and Tongue Numbness

*Ground breaking procedure relieves MS and dystonia pain for Scottish patient

*

Proceeding with caution

*

Living with Ian's MS

*

Health agencies won't sanction national trials of controversial MS treatment

*"
par CCSVI in Multiple Sclerosis, mardi 31 août 2010, à 22:29

A criticism of Dr. Embry's essay has been that he is attacking the larger group of MS Society employees, without naming those who are in the medical advisory panel---the REAL decision makers in the allocation of research monies and advisory board to the MS Society and health ministry.    I felt it was important that Canadians understand who is guiding your MS Society in making decisions on how to allocate research money and how to investigate MS.

 

Here is the 2009-2010 Medical Advisory Committee

I found their names here:  (note: it was not easy to find this on the site)

http://mssociety.ca/en/research/researchfunding.htm

Note that most of these doctors have vested financial interest in maintaining the status quo view of Multiple Sclerosis:  MS as autoimmune, EAE as the animal model, industry connections to pharmaceutical corporations.  

Please note the number of doctors with ties to McGill University---the most vocal anti-CCSVI research establishment.

Could this be why?

http://www.mcgill.ca/newsroom/news/item/?item_id=107996

 

NOTE!!!!  Dr. V.Wee Yong and fellow panel member, Dr. Metz, are working for STEM CELL THERAPEUTICS---

http://www.marketwire.com/press-release/Stem-Cell-Therapeutics-Corp-Announces-Dr-V-Wee-Yongs-Presentation-25th-Congress-European-TSX-VENTURE-SSS-1043379.htm

 

Medical Advisory Committee Chair Dr. V. Wee Yong, Calgary, Alberta

 

Dr. V. Wee Yong is a Professor in the Departments of Clinical Neurosciences and Oncology at The University of Calgary.  He received his Ph.D. from the University of British Columbia, Vancouver, and started his faculty appointment at the Montreal Neurological Institute, McGillUniversity, in 1989.  Dr. Yong relocated to Calgary in 1996.  Dr. Yong’s research interests lie in the area of neuroimmunology, neuroprotection and CNS regeneration.  His scientific projects have been guided by 3 diseases: multiple sclerosis (MS), spinal cord injury and malignant gliomas.  Dr. Yong has published over 150 peer-reviewed manuscripts and his research has been translated into clinical trials in MS and spinal cord injury.  Dr. Yong co-directs the MS Program of the Hotchkiss Brain Institute at the University of Calgary.  In 2003, Dr. Yong was awarded the Queen’s Golden Jubilee Year Medallion for volunteer activities on behalf of the Multiple Sclerosis Society of Canada.  In 2004, Dr. Yong assumed the position of Canada Research Chair in Neuroimmunology.  Dr. Yong currently chairs the Medical Advisory Committee of the Multiple Sclerosis Society of Canada and he sits on the International Advisory Board of the International Society of Neuroimmunology.

http://www.vweeyong.com/wee_bio.htm

 

Members Dr. Virender Bhan, Halifax, Nova Scotia 

Dr. Virender Bhan is an Assistant Professor in the Department of Medicine and the Division of Neurology at Dalhousie University.  He is director of the MS Clinic. He also has an interest in general neurology and teaching.

Virender Bhan, MBBS, FRCPC, has disclosed that he has served as an advisor or consultant to Serono, Biogen, Teva, and Berlex.

http://dom.medicine.dal.ca/clinicaldivisions/neurology/faculty.htm

 

Dr. Joan Boggs, Toronto, Ontario 

My research program is aimed at understanding structural mechanisms of cell membrane behaviour, particularly in myelin and the oligodendrocyte. My colleagues and I are currently focusing on the roles of myelin proteins in interactions with the cytoskeleton and the role of glycosphingolipids in cell-surface phenomena. We also study the interactions of other proteins and peptides with the lipid bilayer using a number of biochemical and biophysical techniques, such as hydrophobic photolabeling, electron paramagnetic resonance spectroscopy (spin labeling), and Fourier-transform infrared spectroscopy. These are excellent techniques for studying membrane proteins and lipids. We expect that these studies will aid in the development of treatments for diseases in which the membrane constituents are abnormal and in development of drugs that act on membranes.

http://www.sickkids.ca/AboutSickKids/Directory/People/B/Joan-Boggs-Staff-Profile.html

 

Dr. Samuel David, Montreal, Quebec 

Our work on MS deals with the role of the phospholipase A2 (PLA2) family in the onset and progression of CNS autoimmune disease in mice called experimental allergic encephalomyelitis (EAE). This work has led to the discovery of excellent therapeutic targets for the treatment of the relapsing-remitting form of MS. Our current work is directed at testing new generation PLA2 inhibitors in vivo; the role of suppressors of cytokine signalling (SOCS) in chronic forms of EAE; and the role of molecules involved in iron homeostasis in the pathogenesis of EAE.

http://www.mcgill.ca/crn/investigators/david/

 

Dr. Anthony Feinstein, Toronto, Ontario 

His neuropsychiatry research focuses on the search for cerebral correlates of behavioral disorders associated with multiple sclerosis, traumatic brain injury, and hysteria (Conversion Disorders). In patients with MS, detailed Magnetic Resonance Imaging (MRI) studies have shed light on the pathogenesis of depressive disorders and current work is exploring brain changes associated with pathological laughing and crying. His work in the field of Conversion Disorder has involved developing functional MRI paradigms that complement psychoanalytic interpretations of why patients develop disabling, quasi-neurological symptoms. 

 Dr. Feinstein reports he has received lecture honoraria from Berlex Canada, Serono Canada, Serono USA, Teva Neuroscience, and Avanir Pharmaceuticals.

http://conflict-study.com/biography.html

 

Dr. Mark S. Freedman, Ottawa, Ontario 

The Multiple Sclerosis Scientific Research Foundation is funding a multi-centre project to determine whether transplanting bone marrow stem cells in people with MS can stop the disease. Led by Dr. Mark Freedman (MS neurologist) and Dr. Harold Atkins (bone marrow transplant physician), both at the University of Ottawa, the study will involve 36 people with rapidly progressing multiple sclerosis who are likely to become severely disabled. Twenty-four of the participants will receive bone marrow transplantation while12 other people with the same kind of MS but who do not wish to have the procedure will be the control group. Recruitment began in October 2000. Treatment centres for the study are located in Ottawa, Toronto and Montreal.

Mark S. Freedman, MD, has disclosed that he has received grants for educational activities and clinical research from Serono. He has served as an advisor for Serono, Berlex/Schering, Biogen Idec, and Teva.

http://mssociety.ca/en/research/stemcell_research.htm

 

 

Dr. Rashmi Kothary, Ottawa, Ontario 

Major Research Interests

Transgenic mouse models of neuromuscular disease, Cytoskeletal cross linker proteins and cytoarchitecture integrity, Integrins and myelination, Survival Motor Neuron gene and Spinal Muscular Atrophy (SMA)

http://www.ohri.ca/profiles/kothary.asp

 

Dr. Luanne Metz, Calgary, Alberta 

Dr Metz's research spans many aspects of MS. She is actively involved in clinical trials at all levels. These activities range from being a site investigator for Industry sponsored trials, serving on international trial coordinating committees and safety and data monitoring committees, through to initiating her own investigator initiated trials. She is also involved in health outcomes and health services research and works closely with MS researchers to facilitate their research further understanding MS. Dr Metz is also involved in mentoring and supervising students and fellows during their development as clinicians and researchers of the future. All of these areas inter-relate.

http://www.ucalgary.ca/dcns/neurology/members/metz

 

Dr. Trevor Owens, Denmark 

McGill---Neuroimmunology, Animal models of neuroinflammatory disease.

http://neurology.mcgill.ca/owens_t.html

 

Dr. Christina Wolfson, Montreal, Quebec

McGill--

 

 Dr. John Richert, National MS Society Liaison (USA) 

"People often ask me what’s coming down the pipeline for MS—what’s the next break- through. I tend to point out that 

within a few years we’ll likely have more effective and more convenient weapons to fight the immune activity that underlies multiple sclerosis. "

 

Dr. Jack P. Antel, Montreal, Quebec (ex-officio) 

Again----from McGill

. Jack Antel’s research program focuses on using human neural and immune cells to understand how their interactions contribute to the development of neurological disease, specifically multiple sclerosis. The studies include how immune cells reach the central nervous system, how the state of activity of the endogenous glial cells contributes to persistence of the immune response, and how the immune mediators induce injury of the target cells, namely oligodendrocytes and neurons and their processes. These studies also aim to understand how the nervous system is able to repair itself from such injury.

http://www.mni.mcgill.ca/neuro_team/neuroimmunology/jack_antel/

 

Dr. Paul O'Connor, Scientific and Clinical Advisor (ex-officio)

----Dr. Paul O'Connor, a neurologist at Toronto's St. Michael's Hospital, said he would advise against patients even getting tested.

"There is not a shred of real evidence anywhere that messing around with these veins does anything to help MS patients," he said. "If there is no treatment for this condition, there is no need to detect it."

http://www.nationalpost.com/news/story.html?id=2548171

45962_427060602297_110796282297_4698302_"
*"LeBlanc-David recovering
Dana MacPhail
 
maxine.jpg
Pictured holding a picket sign - depicting a happy and unhappy (or blocked) vein - created by her daughter Julie for a May protest in Halifax, Maxine LeBlanc-David is recovering at home.
 

POIRIERVILLE- It took a lot of money, research and travel but Maxine LeBlanc-David has been “angioplastied”.
Although balloon angioplasty is a routine procedure in cardiac medicine, it is not yet approved in Canada for MS patients. So last month, the Isle Madame woman embarked on a 40-hour round trip to Sofia, Bulgaria for the treatment that she believes has halted the symptoms of her Multiple Sclerosis.
The procedure took longer than expected – almost three hours – and she says it felt strange.
The idea comes from Italian doctor Paolo Zamboni, a former vascular surgeon and professor at the University of Ferrara in northern Italy, who found, in a 2009 preliminary study, that some symptoms of MS abated after the “liberation treatment,” or angioplasty procedure, to open their previously-blocked veins. He coined the condition Chronic Cerebrospinal Venous Insufficiency (CCSVI) and has urged governments around the world, including Canada, to offer the procedure to MS patients.
The science behind using angioplasty to unblock veins to improve the quality of life for MS patients is in its infancy and still “experimental”, says the MS Society of Canada. But LeBlanc-David, and a vocal and educated on-line group of MS patients, say differently.
“What I’ve been trying to say to people and to government and to the MS Society, to everybody, is why can’t we look at CCSVI, the problem with blocked veins, as a thing within itself and just fix that and then see if it has a relationship to MS, which I know for sure it does,” she said, contending that several MS sufferers, including herself, have offered to sign waivers in order to be angioplastied – a term used by members of the online community who have had the procedure - in Canada.
Diagnosed with secondary progressive MS more than a decade ago, LeBlanc-David says she was typically able to take on three tasks a day. Taking a shower, making a meal and eating it amounted to a full day of activities for her, because she had to take several breaks throughout the day to complete her agenda.
That has changed.
“The difference is incredible as far as fatigue, that is, wow. It’s unbelievable. I was getting worse and worse,” she says, noting happily that she is now able to tackle physiotherapy, a task her energy level did not allow this time last year.
Changes to her voice and the circulation in her feet – previously purple because of low blood circulation - have also been noted. She also says she finds it easier to walk on carpeted floor, whereas before she tended to drag her feet.
She still uses a Rollator walker to get around, and recognizes that, to others, it may seem that she hasn’t improved. But she says she feels herself getting stronger in mind and body with each passing day.
“To me it’s a big improvement. The fact that I can enjoy my days and do all the things I love to do in a day; I can eat, I can cook, I can play music, I like having friends around and I like to be able to do my own thing. So I am doing everything instead of one thing in a day, so that’s a big improvement.”
She says she is working to the edge of her abilities to expand her abilities and hopes to cap off the summer with a walk along Pondville Provincial Beach. Noting she felt sadness as was able to receive the treatment while so many others wait, she will also continue to advocate that the procedure be offered to all MS patients in Canada."

*

 Federal agency won't yet fund studies into MS theory

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Woman takes on treatment

NewS.29.20100831172234_20100901.jpg

Debra McDonald lifts her hands and, with a triumphant smile, flexes her fingers.

To the 42-year-old woman, who has spent the last 13 years living with progressively more debilitating effects of multiple sclerosis (MS), this is indeed a major accomplishment.

Prior to a July 27 balloon angioplasty, McDonald suffered severe spasms in her legs and hands, numbness in her hands and feet and circulation so poor that her feet were almost black. 

Her hands were clenched and she was plagued by incontinence and the inability to do things for herself.

“I was pretty much paralyzed, she says. “Your dignity is gone, you’re tied to the washroom and your quality of life is down the tube, (particularly) for an extrovert.”

An athletic woman who loves sports and the great outdoors, McDonald was diagnosed with MS in 1997 and spent the next five years packing as many of her favourite things into her life as possible. A silviculture supervisor, McDonald was used to trekking through the woods, but had to modify her job to more office work as MS stole various capabilities – a job she managed to continue until eight weeks ago.

“It’s a real struggle now. I have difficulty typing or holding a pen,” she says. “I was given the option to take time off to do what I needed to get things going again.”

Getting going included a long and tiring trip to Mexico for a treatment that is readily available in Canada to those with cardiac issues, but not to MS patients.

“Treatment for MS in Canada is zero,” says a frustrated McDonald. “I did have drugs but they didn’t do any good.”

Hope was not a prominent word in her vocabulary until November 2009, when a news item on TV described the work of an Italian doctor who suggested an abnormality in blood drainage from the brain and spinal cord may contribute to nervous system damage in MS.

MS societies in Canada and the U.S. agreed to commit $2.4 million to further research and five Canadian provinces and Seattle, Wa. have specialized radiologists who are testing chronic cerebrospinal venous insufficiency (CCSVI).

Because the procedure is not covered by B.C.’s Medical Services Plan, McDonald and her husband, Grant, spent $15,000 to get testing and treatment in Merida, Mexico.

Testing revealed that the blood flow in a vein just below McDonald’s collarbone was down to 0.1 mm of flow in comparison to the vein on the other side of her neck, which was a healthier 1.1 mm.

The day after the testing, McDonald underwent the procedure and recalls the joy of waking up the next morning to warm feet and the ability to wiggle her toes and unclench her hands.

And other improvements have come too. McDonald is now able to have physiotherapy, finds objects easier to hold and is gaining strength.

“Before, I couldn’t lift my legs or contract muscles and my legs were so spastic I could barely stand even with my husband’s help,” she says, noting she can now lift herself up out of her wheelchair and walk six or seven steps with a walker. “And I can whistle again.”

Before she and Grant headed to Mexico, McDonald gave Dr. Warren Bell a list of all her symptoms. On her return, the two discussed the improvements, including her ability to pronounce the letter L again.

McDonald will need to have an MRI in six months and is wondering whether she will go on an extended B.C. wait-list or go elsewhere, opening her own purse again to do so.

Bell meanwhile favours providing the procedure in B.C. 

“Because the risk-benefit ratio is so favourable, it is a procedure that I would recommend,” she says. “So little is done for MS... especially in a patient where the disease is severe and the options are few, it’s something I think should be given really serious consideration.”"

*"

Tired of waiting'

Local News

Posted By MARG. BRUINEMAN

Posted -27 second ago
620537.dat

Mark Wanzel photoCarol Bullis has helped to collected 9,400 signatures supporting vascular scans and the follow-up treatments for all MS patients in Canada. Carol who was diagnosed with the neurological disease 10 years ago will also be heading to Mexico to undergo the angioplasty procedure. Aug/31/10

 

Carol Bullis can't wait.

She, along with two others, has collected names for a petition. And, for the past 10 years, she's been taking medication to control multiple sclerosis.

In four days, she's hopping on a plane for her favourite vacation destination. But this time, her trip to Cabo San Lucas, Mexico is all about her and her future. She will undergo a series of tests to confirm local results that she has a blockage in her vein, impairing blood flow. If the tests determine it exists, she will undergo angioplasty to clear it, in hopes that her MS symptoms will ease off.

"I'm tired of waiting," she declared Tuesday, just as the Canadian Institutes of Health announced it wouldn't support clinical trials on the procedure she wants done.

This summer, Bullis and two others with MS have collected 9,400 signatures supporting Barrie MPP Aileen Carroll's request.

They want the government to sanction vascular scans and the follow-up treatments for all MS patients in Canada.

The Ontario government has said it won't support the treatment, but the Saskatchewan government has said it will.

Bullis, now 44, was diagnosed with the neurological disease 10 years ago. Since then she's been taking medication in hopes of keeping it at bay.

In November, CTV aired a documentary featuring the work of Italian doctor, Dr. Paolo Zamboni, who declared his findings that he found a blockage he called chronic cerebrospinal venous insufficiency (CCSVI) in many patients with MS. He said he found that angioplasty often helped clear the condition in many patients, which included his wife.

"I heard about it (CCSVI) in November, like everyone else," said Bullis.

By March, she had the test done in Barrie, confirming she had the condition.

And she spent much of the next two months researching the subject and the treatment.

Coincidentally, a clinic in the Mexican town where she's vacationed for the past five years offers the treatment. She said she's done her research, and is confident with the clinic and its level of service. She, and her travel mate, are also familiar with the community — they know the bus routes and some Spanish to get by.

Bullis considers herself fortunate. Although a back injury related to the MS makes walking a bit tough, her condition hasn't been as severe as some other patients and she's been able to continue long hours at work as a marketing manager, which is important to her.

Bullis also received a great deal of support from those who surround her, including her husband, family, friends, colleagues and her employer. In fact, she says that support network is helping to pay for the trip and the treatment she expects will total about $14,000.

Even though the jury is still out on the effectiveness of the treatment, Bullis said it's something in the absence of nothing.

"It's exciting because it's non-invasive and it's worth the shot," she said. "Even if I have a small percentage of improvement, it's better than I am today."

And, she added, if the blockage returns, like it has for many who have undergone the treatment, Bullis says she won't hesitate. She'll undergo the procedure again.

"Anything that will make me feel better.""





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