The following is a copy of the Facebook page of Joan Beal describing the change in thinking about MS treatments triggered by Professor Zamboni's insight that MS is a vascular disorder. A wonderful summary. However, I must add this.
REVISION: Those with "Skeletal" MS will not benefit from venoplasty because their vein obstruction is caused by skeletal (bone) and/or muscular pressure and obstructed Cerebrospinal fluid flow. In that case, experts who treat body structure (chiropracters, osteopaths, dentists) or body tension (massage, acupuncture) are the appropriate therapists. Unfortunately appropriate practitioners are not necessarily aware of or trained to treat MS as a vascular disorder.
Joan Beal writes on Thisisms.com July 25, 2013 (cheerleader)
"On Facebook, you can get all of the links to peer-reviewed research,
which helps further explain each item. https://www.facebook.com/notes/ccsvi-in ...
6965447211
Jeff's my husband, he's four years past venoplasty at Stanford (he was the first
American treated for CCSVI in the states). He's still doing really well with no
MS progression, no relapses and a reversal of gray matter atrophy. We went
mountain biking yesterday, and I still can't keep up with him. I started the
first CCSVI thread on here back in 2008, been a TIMS member since 2007 when Jeff
got diagnosed with MS. Always interested in the vascular connection, since
Jeff's blood numbers were very strange at his diagnosis--I looked into
endothelial health. But his blood numbers are great now, and he's still eating
well, moving, staying postive, getting his UV rays- living a cardiovascularly
healthy life. Here's the program I put together to help him.
http://www.ccsvi.org/index.php/helping- ... ial-health" end of quote
Her great summary was posted on Thisisms.com by NZer1 on Friday July 19, 2013 Under CCSVI thread
Quote "What has changed? 20 July 2013 at 06:24
In the four years since this page was started, there have been many profound changes in
mainstream MS treatment and research. The connection to the vascular system is
real for many, and is being dealt with in a "sideways" manner by neurologists.
I do not expect we will hear that CCSVI is valid from neurology--they will
attempt to rename it, requantify slowed venous return, and make it their own.
And they will create drugs to modify it. link
But the facts remain:
1. People with MS have less cerebral blood flow than normal
people. Their blood flow exits the brain at a slower rate. Researchers are
looking at drug therapies to address this fact, but it is no longer an item of
debate. Hypoperfusion is real, and it damages the brain. Whether it is a cause
or effect of MS will be debated for decades.link
2. People with MS do better with exposure to UV rays. It relieves symptoms in many. It is
thought this might be due to vitamin D levels, but it might also be due to how
UV rays release nitric oxide and change the endothelium and blood flow. link
3. People with MS are being advised to look into their nutrition and to
eat more fruits, vegetables and whole foods and less animal fats and processed
foods. When Dr. Swank suggested this 60 years ago, it was called "junk
science." It is now given as helpful advice by the NMSS and the AAN. Same
thing with exercise. Only a decade ago, pwMS were told to not exert themselves.
Now we know that physical exercise and activity delays progression. Same thing
with smoking cessation, stress reduction, and better sleep. All of these
cardiovascular lifestyle changes can make a difference.link
4. Oxidative stress and inflammation are recognized as driving forces in MS
progression. This has lead to exploratons of new modalities of treatment, like
the Nrf2 pathway. link
5. Gray matter health has been recognized as a more accurate biomarker of MS progression than white matter lesions. Gray matter atrophy will become the new target for MS therapies.link
6. PwMS have much higher levels of fibrin and endothelin-1 in their serum than
normals. These are markers of endothelial dysfunction link
7. Upright MRI has allowed us to see how cerebrospinal fluid and blood return to
the heart is slowed and impeded in pwMS link
8. CCSVI is being explored around the globe. There are literally hundreds of papers published in
vascular and neurological journals. New papers come to press every day. Not
many utilize Dr. Zamboni's diagnostic protocol, but those that do are finding
CCSVI in pwMS. link
All of this is new. And it has happened in just the past four years.
+++++++++++++++++++++++++++++
For those of us waiting for venoplasty to be accepted as an MS treatment, we have to step
back and view the other changes that have happened in MS care.
The American Academy of Neurologists has several papers featured on their page which
connect slowed blood flow and neurodegenerative disease. They have a patient
outreach branch--The American Brain Foundation-- and they have a yearly Brain
Fair to discuss diet and lifestyle changes people with neurodegenerative
diseases, including MS, should consider. So much for Dr. Swank's junk science.
But most importantly, all of our lives have changed. For those
who did not receive lasting benefit from venoplasty to address CCSVI--many have
moved on to look at other therapies and modalities for treatment of their
disease. For those who have done well with this vascular approach, life has
gone on.
I'm in that fortunate position now. Jeff is doing quite well--
he is working, up and active, with no further MS progression. His gray matter
atrophy is gone. Our son is off to college, and we find ourselves in a new
phase of life. I've curtailed my online and advocacy time to rediscover my
career, my other pursuits, friendships, travel, and to be present in my own
life.
When reporters, scientists, neurologists, MS specialists and
others say--"Oh, the connection of CCSVI to MS, that's simply junk
science"---tell them about Dr. Roy Swank. Remember how long it took his
observations of "capillary fragility", slowed blood flow, and hypercoagulation
to be accepted as part of MS. He was noting endothelial dysfunction decades
before scientists knew about nitric oxide and how environmental factors
contributed to blood flow. And he has never once been credited by mainstream
neurology. You won't see his name or read his research in their journals. But he was right.
++++++++++++++++++++++++++++++
Here's a wonderful video Christopher A. found on Dr. Swank's work. It was made in 1989 as part of
a Canadian news investigation into the success of Dr. Swank's diet in pwMS. If
you haven't seen it, it's a must watch. Because today, 25 years later, the NMSS
is making these very same dietary and lifestyle recomendations to pwMS.
https://www.youtube.com/watch?feature=p ... Enn_AZT-SU
Dr. Zamboni's discovery of CCSVI is in the same category. He has revolutionized how we look at cerebral blood
flow, by studying the under-researched extracranial venous system. He is
decades ahead of his time. His discovery of CCSVI may be the other part of the
equation on slowed venous return and endothelial dysfunction in pwMS. To say
that it is junk science, and that there is no connection in venous return in MS,
is to negate scientific fact.
Joan
https://www.facebook.com/notes/ccsvi-in ... =notify_me" end of quote
(After reading her CCSVI Alliance paper on endothelial health I realize another factor which damaged my childhood health was the exposure to both my parents heavy smoking.)
REVISION: Those with "Skeletal" MS will not benefit from venoplasty because their vein obstruction is caused by skeletal (bone) and/or muscular pressure and obstructed Cerebrospinal fluid flow. In that case, experts who treat body structure (chiropracters, osteopaths, dentists) or body tension (massage, acupuncture) are the appropriate therapists. Unfortunately appropriate practitioners are not necessarily aware of or trained to treat MS as a vascular disorder.
Joan Beal writes on Thisisms.com July 25, 2013 (cheerleader)
"On Facebook, you can get all of the links to peer-reviewed research,
which helps further explain each item. https://www.facebook.com/notes/ccsvi-in ...
6965447211
Jeff's my husband, he's four years past venoplasty at Stanford (he was the first
American treated for CCSVI in the states). He's still doing really well with no
MS progression, no relapses and a reversal of gray matter atrophy. We went
mountain biking yesterday, and I still can't keep up with him. I started the
first CCSVI thread on here back in 2008, been a TIMS member since 2007 when Jeff
got diagnosed with MS. Always interested in the vascular connection, since
Jeff's blood numbers were very strange at his diagnosis--I looked into
endothelial health. But his blood numbers are great now, and he's still eating
well, moving, staying postive, getting his UV rays- living a cardiovascularly
healthy life. Here's the program I put together to help him.
http://www.ccsvi.org/index.php/helping- ... ial-health" end of quote
Her great summary was posted on Thisisms.com by NZer1 on Friday July 19, 2013 Under CCSVI thread
Quote "What has changed? 20 July 2013 at 06:24
In the four years since this page was started, there have been many profound changes in
mainstream MS treatment and research. The connection to the vascular system is
real for many, and is being dealt with in a "sideways" manner by neurologists.
I do not expect we will hear that CCSVI is valid from neurology--they will
attempt to rename it, requantify slowed venous return, and make it their own.
And they will create drugs to modify it. link
But the facts remain:
1. People with MS have less cerebral blood flow than normal
people. Their blood flow exits the brain at a slower rate. Researchers are
looking at drug therapies to address this fact, but it is no longer an item of
debate. Hypoperfusion is real, and it damages the brain. Whether it is a cause
or effect of MS will be debated for decades.link
2. People with MS do better with exposure to UV rays. It relieves symptoms in many. It is
thought this might be due to vitamin D levels, but it might also be due to how
UV rays release nitric oxide and change the endothelium and blood flow. link
3. People with MS are being advised to look into their nutrition and to
eat more fruits, vegetables and whole foods and less animal fats and processed
foods. When Dr. Swank suggested this 60 years ago, it was called "junk
science." It is now given as helpful advice by the NMSS and the AAN. Same
thing with exercise. Only a decade ago, pwMS were told to not exert themselves.
Now we know that physical exercise and activity delays progression. Same thing
with smoking cessation, stress reduction, and better sleep. All of these
cardiovascular lifestyle changes can make a difference.link
4. Oxidative stress and inflammation are recognized as driving forces in MS
progression. This has lead to exploratons of new modalities of treatment, like
the Nrf2 pathway. link
5. Gray matter health has been recognized as a more accurate biomarker of MS progression than white matter lesions. Gray matter atrophy will become the new target for MS therapies.link
6. PwMS have much higher levels of fibrin and endothelin-1 in their serum than
normals. These are markers of endothelial dysfunction link
7. Upright MRI has allowed us to see how cerebrospinal fluid and blood return to
the heart is slowed and impeded in pwMS link
8. CCSVI is being explored around the globe. There are literally hundreds of papers published in
vascular and neurological journals. New papers come to press every day. Not
many utilize Dr. Zamboni's diagnostic protocol, but those that do are finding
CCSVI in pwMS. link
All of this is new. And it has happened in just the past four years.
+++++++++++++++++++++++++++++
For those of us waiting for venoplasty to be accepted as an MS treatment, we have to step
back and view the other changes that have happened in MS care.
The American Academy of Neurologists has several papers featured on their page which
connect slowed blood flow and neurodegenerative disease. They have a patient
outreach branch--The American Brain Foundation-- and they have a yearly Brain
Fair to discuss diet and lifestyle changes people with neurodegenerative
diseases, including MS, should consider. So much for Dr. Swank's junk science.
But most importantly, all of our lives have changed. For those
who did not receive lasting benefit from venoplasty to address CCSVI--many have
moved on to look at other therapies and modalities for treatment of their
disease. For those who have done well with this vascular approach, life has
gone on.
I'm in that fortunate position now. Jeff is doing quite well--
he is working, up and active, with no further MS progression. His gray matter
atrophy is gone. Our son is off to college, and we find ourselves in a new
phase of life. I've curtailed my online and advocacy time to rediscover my
career, my other pursuits, friendships, travel, and to be present in my own
life.
When reporters, scientists, neurologists, MS specialists and
others say--"Oh, the connection of CCSVI to MS, that's simply junk
science"---tell them about Dr. Roy Swank. Remember how long it took his
observations of "capillary fragility", slowed blood flow, and hypercoagulation
to be accepted as part of MS. He was noting endothelial dysfunction decades
before scientists knew about nitric oxide and how environmental factors
contributed to blood flow. And he has never once been credited by mainstream
neurology. You won't see his name or read his research in their journals. But he was right.
++++++++++++++++++++++++++++++
Here's a wonderful video Christopher A. found on Dr. Swank's work. It was made in 1989 as part of
a Canadian news investigation into the success of Dr. Swank's diet in pwMS. If
you haven't seen it, it's a must watch. Because today, 25 years later, the NMSS
is making these very same dietary and lifestyle recomendations to pwMS.
https://www.youtube.com/watch?feature=p ... Enn_AZT-SU
Dr. Zamboni's discovery of CCSVI is in the same category. He has revolutionized how we look at cerebral blood
flow, by studying the under-researched extracranial venous system. He is
decades ahead of his time. His discovery of CCSVI may be the other part of the
equation on slowed venous return and endothelial dysfunction in pwMS. To say
that it is junk science, and that there is no connection in venous return in MS,
is to negate scientific fact.
Joan
https://www.facebook.com/notes/ccsvi-in ... =notify_me" end of quote
(After reading her CCSVI Alliance paper on endothelial health I realize another factor which damaged my childhood health was the exposure to both my parents heavy smoking.)
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