From M.S. Patients, Outcry for Unproved Treatment

[charityfundraiser]

From M.S. Patients, Outcry for Unproved Treatment
http://www.nytimes.com/2010/06/29/health/29vein.html

Some parallels with CFS and an interesting idea that fatigue might be related to narrowing of veins in the neck and chest preventing drainage of blood from the head.

 

[caledonia]

I was struck by the similarities of the MS patients' outlook to CFS patients. They're tired of waiting for a cure, willing to try experimental treatments. Also the MS Society being accused of being too slow and conservative, and not aware of the desperation of patients. But hey, they were able to scrape up 2.4 million for research, something the CAA can't seem to do.

The next question is, what causes the narrowing of the veins?

 

[Rosemary]

Dr Zamboni found references to excess iron as a possible cause of MS

U.S. and Canadian researchers are trying to test Dr. Zamboni's premise.

For the Italian professor, however, the quest was both personal and professional and the results were stunning.

Fighting for his wife's health, Dr. Zamboni looked for answers in the medical literature. He found repeated references, dating back a century, to excess iron as a possible cause of MS. The heavy metal can cause inflammation and cell death, hallmarks of the disease. The vascular surgeon was intrigued – coincidentally, he had been researching how iron buildup damages blood vessels in the legs, and wondered if there could be a similar problem in the blood vessels of the brain.

Using ultrasound to examine the vessels leading in and out of the brain, Dr. Zamboni made a startling find: In more than 90 per cent of people with multiple sclerosis, including his spouse, the veins draining blood from the brain were malformed or blocked. In people without MS, they were not.

He hypothesized that iron was damaging the blood vessels and allowing the heavy metal, along with other unwelcome cells, to cross the crucial brain-blood barrier. (The barrier keeps blood and cerebrospinal fluid separate. In MS, immune cells cross the blood-brain barrier, where they destroy myelin, a crucial sheathing on nerves.)

More striking still was that, when Dr. Zamboni performed a simple operation to unclog veins and get blood flowing normally again, many of the symptoms of MS disappeared. The procedure is similar to angioplasty, in which a catheter is threaded into the groin and up into the arteries, where a balloon is inflated to clear the blockages. His wife, who had the surgery three years ago, has not had an attack since.

http://www.theglobeandmail.com/news...love-leads-to-ms-breakthrough/article1372414/
Researcher's labour of love leads to MS breakthrough

 

[Rosemary]

Anomalous venous blood flow and iron deposition in multiple sclerosis

Review Article by Professor Zamboni

Journal of Cerebral Blood Flow & Metabolism (2009) 29, 1867–1878; doi:10.1038/jcbfm.2009.180; published online 2 September 2009

Anomalous venous blood flow and iron deposition in multiple sclerosis
Ajay Vikram Singh1 and Paolo Zamboni2

1.1Department of Physics, European School of Molecular Medicine (SEMM), IFOM-IEO Campus, Centro Interdisciplinare Materiali e Interfacce Nanostrutturati (CIMAINA), University of Milan, Milan, Italy
2.2Vascular Diseases Center, University of Ferrara, Ferrara, Italy
Correspondence: Professor P Zamboni, Director Vascular Diseases Center, University of Ferrara, Milan, Italy. E-mail: zmp@unife.it

Received 27 April 2009; Revised 27 July 2009; Accepted 29 July 2009; Published online 2 September 2009.

Abstract
Multiple sclerosis (MS) is primarily an autoimmune disorder of unknown origin. This review focuses iron overload and oxidative stress as surrounding cause that leads to immunomodulation in chronic MS. Iron overload has been demonstrated in MS lesions, as a feature common with other neurodegenerative disorders. However, the recent description of chronic cerebrospinal venous insufficiency (CCSVI) associated to MS, with significant anomalies in cerebral venous outflow hemodynamics, permit to propose a parallel with chronic venous disorders (CVDs) in the mechanism of iron deposition. Abnormal cerebral venous reflux is peculiar to MS, and was not found in a miscellaneous of patients affected by other neurodegenerative disorders characterized by iron stores, such as Parkinson's, Alzheimer's, amyotrophic lateral sclerosis. Several recently published studies support the hypothesis that MS progresses along the venous vasculature. The peculiarity of CCSVI-related cerebral venous blood flow disturbances, together with the histology of the perivenous spaces and recent findings from advanced magnetic resonance imaging techniques, support the hypothesis that iron deposits in MS are a consequence of altered cerebral venous return and chronic insufficient venous drainage.

Keywords:
cerebral venous hemodynamics, cerebrospinal venous insufficiency, demyelination, iron overload, multiple sclerosis, oxidative stress

 

[Daffodil]

i think someone died trying this treatment...but i'd probably try it in a heartbeat.

just goes to show...nothing gets done unless someone of influence or ability is personally affected.

 

[boomer]

I think I recall reading that Dr. Zamboni said there might be viruses in the neck region causing this problem with the malformed veins.

 

[Daffodil]

they'll probably end up finding retroviruses in MS too. i think some studies found retroviral activity in MS

 

[merylg]

In this Australian podcast a patient talks about her symptoms before and after venoplasty. Title of podcast is "CCSVI and Multiple Sclerosis"...third one down list:

http://www.abc.net.au/radionational/programs/healthreport/2011-03-21/2991552

 

[merylg]

An interesting Australian TV programme on the controversy of treating CCSVI in MS patients:

http://www.abc.net.au/7.30/content/2011/s3399100.htm

 

[Enid]

This is so interesting - thanks for posting - it does seem a very possible model for ME too. I much recall in my early days of everything tasting metallic. My Neurologist chasing MS and Parkinsons though neither developed - just all the nasty ME symptoms. (Brain MRI scan showed "high spots" - usually associated with demyelisation I was told).

 

[Jenny]

There are quite a few previous threads on this, for example:

http://forums.phoenixrising.me/show...rospinal-Venous-Insufficiency&highlight=CCSVI

 

[Desdinova]

Scientifically, the jury is out: Dr. Zambonis hypothesis is being studied. It is not known whether narrowed veins are more common in people with multiple sclerosis than in others, and even if they are, whether the narrowings are a cause, or an effect, of the disease. There is no solid proof that opening the veins can help. There have been no studies with control groups the only way to find out whether a treatment works.

I'm somewhat skeptical as to this being the cause of MS. But would bet a dollar to a donut that it's an effect found in some of the classes of MS.

The controversy has exposed the deep frustration of many people with this incurable, disabling disease, who feel that research has let them down. It is a case study in the power of the Internet to inform and unite angry patientswhich may be a double-edged sword. Pressure from activists helped persuade the Multiple Sclerosis Society to pay for studies of Dr. Zambonis theory, but the Internet buzz has also created an avid market for a therapy that is still unproved.

Its eye-opening the way this group of patients has grabbed hold of the social-networking technology, said Dr. Simon, an interventional radiologist at JFK Medical Center in Edison, N.J. Theyve taken this to a level Ive not seen in other patients. Patients used to read an article or two. Now, theyre actually seeing procedures on YouTube. Is this the future of medicine?

More than likely they're just tired of feeling alone and stuck. And I'd be willing to bet also a little tired of what a coworker with MS refereed to as "Piddling Around" lots of Effort and Money, with minimal return in results.