MS treatment by Neurologists today resembles
the obsolete practice of blood-letting.
Generally harmful to the patient, blood-letting was used from antiquity
to the end of the 19th Century (2,000 years!) by Medical Doctors who
considered that it was “better to give any treatment than
nothing at all”(quote Wikipedia) in short, the placebo effect. Since
1990 at least 6 immunosuppressive drugs have been developed to treat MS, 4 more
are in the pipeline. They are
based on the erroneous auto-immune theory as the cause of MS. Unfortunately,
some of these drugs not only are ineffective to treat the disease, they are
outright harmful. Tysarbi, though considered highly effective in relapse
remitting form of the disease (for at least 12 months) has
resulted in cases of brain infection and death. (Looked at another way, killing the
patient might be an effective way to stop Multiple Sclerosis, but I don’t think
it should be recommended.)
Recently on the ThisIsMs.com website a
patient described how his Neurologist was bullying him into taking Tysabri
immediately, no questions to be asked or answered.. It
was that or nothing. (Nothing is probably better, but the patient’s condition
was in rapid decline, probably because he was being bullied. ) No other
Neurologist in the area would take him as a patient (they function as a tightly
knit clan) and the Neurologist refused to discuss the issue with him or take
precautionary measures. My
response to the patient’s cry for help.
“That neurologist is killing you. The surefire way for me to have
an "attack" is to walk into a neurologist's office, I avoid them like the
plague. Stress is likely just forcing the blood right back up into your brain.
This is criminal behavior. Yes, this is the CCSVI theory but I've found a simple
neck massage forcing the blood down towards the heart is enough to stop an
attack for me. If you can get some relief from the stress this person is
inflicting on you, I have self help ideas on my site that might be of use to
you, at least to start looking at things differently and open the possibility of
self help and non drug options. My opinions don't matter, it's just opening a
door to see things differently. No point arguing with a neurologist. Doing that
is enough to make me good and sick. I can't believe you are being bullied like
that.”
And after reading the potentially fatal consequences of stopping
treatment, I can see why the patient was so worried.
Here's a recent case report documenting the death of an MS
patient from immune reconstitution inflammatory syndrome (IRIS) following
Tysabri withdrawal.
“Lethal Multiple Sclerosis Relapse After
Natalizumab Withdrawal
Neurology. 2012 Oct 24. [Epub ahead of
print]
Natalizumab dramatically reduces relapses in patients with active
multiple sclerosis (MS), but it may induce progressive multifocal
leukoencephalopathy (PML).(1) A rebound of MS or an immune reconstitution
inflammatory syndrome (IRIS) were described after natalizumab withdrawal, even
in the absence of PML.(2,3) Very few data concerning the potential severity and
the neuropathology of this event are available. We report the case of a
50-year-old patient with MS who developed a fulminating relapse 3 months after
stopping natalizumab, leading to death despite intensive care and
immunosuppressive therapy. Radiologic and neuropathologic findings provide
interesting data regarding the nature of the rebound.”
Posted on thisisms.com oct
31, 2012
The great historian Eugen Weber, explaining why so many Doctors
belonged to the right wing Royalist party l’Action Francaise in 1930’s France,
once wrote that “the authoritarian temperament is a professional deformation in medicine.”
Understand this, your Doctor is the boss. And he likes to use
Science as the stick to beat you with. Doctors aren’t scientists. They study
science in medical school, but they generally aren’t researchers and they depend
on what they’ve been taught (or what the drug companies say.) Bosses
aren’t about to take any lip from a sick person. There you are weak, falling apart, and
the Doctor is strong, in charge and fighting like hell to defend his authority
and his ego. And you are sick and fighting for your life. The battle is grossly
onesided and unfair.
A Neurologist can actually injure a patient by stressing him. Many are dangerous. After the initial
diagnosis using the MRI, spinal tap, visual evoked potential or response eye
exam and Vit B-12 blood test, I see
no reason to repeat any of these examinations. The post spinal tap headache is
painful and the exam potentially harmful. Lesions revealed by the MRI exam don’t
correspond to the handicap of the patient, some people have few lesions and an
extreme handicap, others many lesions and little handicap. The MRI stands for
Magnetic Resonance Imagery, that is to say they are beaming a giant magnetic
field at you which can only disrupt one’s natural electro-magnetic field
necessitating acupuncture treatments to re-establish equilibrium. (Though
considered harmless, I felt it took me 6 weeks to feel normal again.) Done
once, I see no reason to do it again. The eye exam does not appear harmful; if
you are taking B-12 as I am that test will be
negative.
Neurologists seem obsessed with doing these exams and building a
dossier. Maybe they think they are doing helpful research. Before a surgery to
be performed in a French hospital in 1996 a Gynecologist sent me to a
Neurologist to confirm that the surgery would not
be contraindicated. The Neurologist gave me a sealed letter to give to
the Gynecologist. I held it in my hand and asked myself “Are you masochistic
enough to give this letter without opening it?” The answer was no. It was like
offending God to open that letter, but I did. It said, “We should profit from
her stay in the hospital to do a spinal tap, MRI exam etc.” I told the
Gynecologist I would go elsewhere (though she assured me they couldn’t do
anything without my permission.)
The only reason I need a Neurologist is for handicap cards, or to
protect me from obligations I can not meet. Once in San Francisco in 1990 I
asked to be excused from jury duty. The Neurologist refused, saying that the
authorities didn’t want to routinely excuse MS patients. I am not one to shirk
my civic duty, but at the time I was going through a divorce, under a great deal
of pressure and knew I dared not find myself under an obligation I could not
meet. I told the Doctor “You can’t do anything for me, the only thing you can do
is write this letter and I expect you to do it.” He was furious and said I would
have to undergo a spinal tap. Anyway, he did write the letter, after which I
returned to my original HMO neurologist who was chagrined that I had gone
elsewhere for the MRI which confirmed the MS diagnosis (unavailable in 1980 when
I first fell ill.) I will never do a spinal tap again. Period.
Neurologists should refer their patients to vein specialists and
interventional radiologists to check on their patient’s vein condition. They
should also inform themselves of nutritional therapy which has proven very
effective for many in controlling the disease (not to mention the various fluid
or energy circulation therapies I have used.) However, peer pressure will likely
prevent them from doing so. And
they might find themselves under attack from some disgruntled patient precisely
for not following standardized therapy. So they too find themselves in a
difficult position if they seek to stray from dogma. Damned if they do, damned
if they don’t. Patients themselves
will have to break the impasse by constant, unrelenting
pressure.
In 1990 a friend insisted I see a Neurologist. He couldn’t believe
there wasn’t an effective treatment for MS and was skeptical of my weird
“natural” therapies. He wanted to believe that MS was like strep throat, I could
take take an antibiotic and like magic the problem would disappear. I told him
if he wanted to pay for it, I
would make the appointment. The Neurologist listened and then told me I should
attend a MS support group meeting for ideas. He did examine me. My neurological
deficits were relatively minor and probably invisible to a stranger. I obviously
didn’t need medication.
So we left and my friend paid the $140 fee. (about $238 in today’s
dollars). He was outraged and I enjoyed the great pleasure of laughing “I told
you so.”
Actually, this was unusually good advice from a Neurologist.
(However, I’m not certain he should have charged so much for it). He needed to
study alternative therapies himself. I heard later (from my Homeopath?) that he
had begun to recommend diet therapy for MS. (This was in Northern California,
world capital of “natural” healing therapies.) This was before the
immunosuppressive drug revolution which must have created a problem for those
Neurologists working outside the drug paradigm.
Apparently the immunosuppressive drugs work only for the early
relapse/remit form of the disease. I need to study the question before further
comment. But once into the Progressive stage, it would seem imperative to adopt
the “natural” therapies – diet, energy circulation, massage, etc.
And some might wish to seek diagnosis and treatment for CCSVI (with or
without the support of a Neurologist.)
Annette Funicello and her husband Glen Holt very courageously
offered to the world a video showing how Ms has ravaged her body. They did so partly I believe to promote
the CCSVI theory and treatment. Angioplasty was the only treatment which has
helped her and she believes had she been treated 25 years ago she wouldn’t be
paralysed today. I assume she has received all the best
treatment Neurologists could provide, and see where it led. It amazes me that MS
patients consult MS info sites and simply rush headlong into drug treatment.
What are they thinking? Why not stop and reflect, be informed?
Important Update: I just learned that the risk of angioplasty vein complications in a recent study (see link below) has been reduced from over 16% to 1.3% thanks to the use of the IVUS device (IntravenousUltraSound) which allows the Doctor to see inside the vein and calibrate exactly the size of the balloon etc. The main challenge for the MS patient now is to find an Interventional Radiologist who has experience using the IVUS device. It amazes me that Neurologists are standing in the way of necessary, available treatment.
http://www.ccsvicare.org/outreach_update03.html
the obsolete practice of blood-letting.
Generally harmful to the patient, blood-letting was used from antiquity
to the end of the 19th Century (2,000 years!) by Medical Doctors who
considered that it was “better to give any treatment than
nothing at all”(quote Wikipedia) in short, the placebo effect. Since
1990 at least 6 immunosuppressive drugs have been developed to treat MS, 4 more
are in the pipeline. They are
based on the erroneous auto-immune theory as the cause of MS. Unfortunately,
some of these drugs not only are ineffective to treat the disease, they are
outright harmful. Tysarbi, though considered highly effective in relapse
remitting form of the disease (for at least 12 months) has
resulted in cases of brain infection and death. (Looked at another way, killing the
patient might be an effective way to stop Multiple Sclerosis, but I don’t think
it should be recommended.)
Recently on the ThisIsMs.com website a
patient described how his Neurologist was bullying him into taking Tysabri
immediately, no questions to be asked or answered.. It
was that or nothing. (Nothing is probably better, but the patient’s condition
was in rapid decline, probably because he was being bullied. ) No other
Neurologist in the area would take him as a patient (they function as a tightly
knit clan) and the Neurologist refused to discuss the issue with him or take
precautionary measures. My
response to the patient’s cry for help.
“That neurologist is killing you. The surefire way for me to have
an "attack" is to walk into a neurologist's office, I avoid them like the
plague. Stress is likely just forcing the blood right back up into your brain.
This is criminal behavior. Yes, this is the CCSVI theory but I've found a simple
neck massage forcing the blood down towards the heart is enough to stop an
attack for me. If you can get some relief from the stress this person is
inflicting on you, I have self help ideas on my site that might be of use to
you, at least to start looking at things differently and open the possibility of
self help and non drug options. My opinions don't matter, it's just opening a
door to see things differently. No point arguing with a neurologist. Doing that
is enough to make me good and sick. I can't believe you are being bullied like
that.”
And after reading the potentially fatal consequences of stopping
treatment, I can see why the patient was so worried.
Here's a recent case report documenting the death of an MS
patient from immune reconstitution inflammatory syndrome (IRIS) following
Tysabri withdrawal.
“Lethal Multiple Sclerosis Relapse After
Natalizumab Withdrawal
Neurology. 2012 Oct 24. [Epub ahead of
print]
Natalizumab dramatically reduces relapses in patients with active
multiple sclerosis (MS), but it may induce progressive multifocal
leukoencephalopathy (PML).(1) A rebound of MS or an immune reconstitution
inflammatory syndrome (IRIS) were described after natalizumab withdrawal, even
in the absence of PML.(2,3) Very few data concerning the potential severity and
the neuropathology of this event are available. We report the case of a
50-year-old patient with MS who developed a fulminating relapse 3 months after
stopping natalizumab, leading to death despite intensive care and
immunosuppressive therapy. Radiologic and neuropathologic findings provide
interesting data regarding the nature of the rebound.”
Posted on thisisms.com oct
31, 2012
The great historian Eugen Weber, explaining why so many Doctors
belonged to the right wing Royalist party l’Action Francaise in 1930’s France,
once wrote that “the authoritarian temperament is a professional deformation in medicine.”
Understand this, your Doctor is the boss. And he likes to use
Science as the stick to beat you with. Doctors aren’t scientists. They study
science in medical school, but they generally aren’t researchers and they depend
on what they’ve been taught (or what the drug companies say.) Bosses
aren’t about to take any lip from a sick person. There you are weak, falling apart, and
the Doctor is strong, in charge and fighting like hell to defend his authority
and his ego. And you are sick and fighting for your life. The battle is grossly
onesided and unfair.
A Neurologist can actually injure a patient by stressing him. Many are dangerous. After the initial
diagnosis using the MRI, spinal tap, visual evoked potential or response eye
exam and Vit B-12 blood test, I see
no reason to repeat any of these examinations. The post spinal tap headache is
painful and the exam potentially harmful. Lesions revealed by the MRI exam don’t
correspond to the handicap of the patient, some people have few lesions and an
extreme handicap, others many lesions and little handicap. The MRI stands for
Magnetic Resonance Imagery, that is to say they are beaming a giant magnetic
field at you which can only disrupt one’s natural electro-magnetic field
necessitating acupuncture treatments to re-establish equilibrium. (Though
considered harmless, I felt it took me 6 weeks to feel normal again.) Done
once, I see no reason to do it again. The eye exam does not appear harmful; if
you are taking B-12 as I am that test will be
negative.
Neurologists seem obsessed with doing these exams and building a
dossier. Maybe they think they are doing helpful research. Before a surgery to
be performed in a French hospital in 1996 a Gynecologist sent me to a
Neurologist to confirm that the surgery would not
be contraindicated. The Neurologist gave me a sealed letter to give to
the Gynecologist. I held it in my hand and asked myself “Are you masochistic
enough to give this letter without opening it?” The answer was no. It was like
offending God to open that letter, but I did. It said, “We should profit from
her stay in the hospital to do a spinal tap, MRI exam etc.” I told the
Gynecologist I would go elsewhere (though she assured me they couldn’t do
anything without my permission.)
The only reason I need a Neurologist is for handicap cards, or to
protect me from obligations I can not meet. Once in San Francisco in 1990 I
asked to be excused from jury duty. The Neurologist refused, saying that the
authorities didn’t want to routinely excuse MS patients. I am not one to shirk
my civic duty, but at the time I was going through a divorce, under a great deal
of pressure and knew I dared not find myself under an obligation I could not
meet. I told the Doctor “You can’t do anything for me, the only thing you can do
is write this letter and I expect you to do it.” He was furious and said I would
have to undergo a spinal tap. Anyway, he did write the letter, after which I
returned to my original HMO neurologist who was chagrined that I had gone
elsewhere for the MRI which confirmed the MS diagnosis (unavailable in 1980 when
I first fell ill.) I will never do a spinal tap again. Period.
Neurologists should refer their patients to vein specialists and
interventional radiologists to check on their patient’s vein condition. They
should also inform themselves of nutritional therapy which has proven very
effective for many in controlling the disease (not to mention the various fluid
or energy circulation therapies I have used.) However, peer pressure will likely
prevent them from doing so. And
they might find themselves under attack from some disgruntled patient precisely
for not following standardized therapy. So they too find themselves in a
difficult position if they seek to stray from dogma. Damned if they do, damned
if they don’t. Patients themselves
will have to break the impasse by constant, unrelenting
pressure.
In 1990 a friend insisted I see a Neurologist. He couldn’t believe
there wasn’t an effective treatment for MS and was skeptical of my weird
“natural” therapies. He wanted to believe that MS was like strep throat, I could
take take an antibiotic and like magic the problem would disappear. I told him
if he wanted to pay for it, I
would make the appointment. The Neurologist listened and then told me I should
attend a MS support group meeting for ideas. He did examine me. My neurological
deficits were relatively minor and probably invisible to a stranger. I obviously
didn’t need medication.
So we left and my friend paid the $140 fee. (about $238 in today’s
dollars). He was outraged and I enjoyed the great pleasure of laughing “I told
you so.”
Actually, this was unusually good advice from a Neurologist.
(However, I’m not certain he should have charged so much for it). He needed to
study alternative therapies himself. I heard later (from my Homeopath?) that he
had begun to recommend diet therapy for MS. (This was in Northern California,
world capital of “natural” healing therapies.) This was before the
immunosuppressive drug revolution which must have created a problem for those
Neurologists working outside the drug paradigm.
Apparently the immunosuppressive drugs work only for the early
relapse/remit form of the disease. I need to study the question before further
comment. But once into the Progressive stage, it would seem imperative to adopt
the “natural” therapies – diet, energy circulation, massage, etc.
And some might wish to seek diagnosis and treatment for CCSVI (with or
without the support of a Neurologist.)
Annette Funicello and her husband Glen Holt very courageously
offered to the world a video showing how Ms has ravaged her body. They did so partly I believe to promote
the CCSVI theory and treatment. Angioplasty was the only treatment which has
helped her and she believes had she been treated 25 years ago she wouldn’t be
paralysed today. I assume she has received all the best
treatment Neurologists could provide, and see where it led. It amazes me that MS
patients consult MS info sites and simply rush headlong into drug treatment.
What are they thinking? Why not stop and reflect, be informed?
Important Update: I just learned that the risk of angioplasty vein complications in a recent study (see link below) has been reduced from over 16% to 1.3% thanks to the use of the IVUS device (IntravenousUltraSound) which allows the Doctor to see inside the vein and calibrate exactly the size of the balloon etc. The main challenge for the MS patient now is to find an Interventional Radiologist who has experience using the IVUS device. It amazes me that Neurologists are standing in the way of necessary, available treatment.
http://www.ccsvicare.org/outreach_update03.html
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