Once the diagnosis has come down, it's a demyelinating
disease, probably MS, step back and relax, at least you don't have a brain
tumour. And stress and anxiety will only make matters worse. Imagine the blood
backing up, flooding your brain and/or central nervous system. You have to stop
that reflux as soon as possible. That means RELAX. All the diagnostic tests in
themselves are stressful, so step back from all that and begin to inform yourself. I believe what is called MS is essentially a dysfunction of the blood/cerebrospinal fluid circulation bathing the central nervous system (brain/spinal cord). There are multiple reasons for this dysfunction which, once discovered, will determine the preferred treatment. But first, one should be certain that one has been properly diagnosed. Numerous infectious agents mimic MS. Lyme disease comes to mind. Since their treatment is usually straitforward (antibiotics), one may be able to stop right there.
Emergency treatment may be prescribed to stop the “attack”. However, once recovered from the crisis, a decision will have to be made about DMD (disease modifying drug) treatment. Before making a decision one might well do a cost/benefit analysis, cost being understood both in terms of one’s health as well as one’s finances. Steroids used to reduce inflammation can lead to avascular necrosis in which the bones die, leaving the victim with crushed joints and in constant pain. Immunosuppressive drugs leave the patient open to a deadly brain infection known as PML (Biogen Idec’s drugs Tysabri and now Tecfidera come to mind). And don’t find yourself in the position of mrsmomnurse who writes about a Tysabri infusion on Thisisms Oct 22, 2014
“ I have just received a bill from Kaiser...charges = 13776.70, Insurance paid = 11021.36, My out of pocket = 2755.34. This is for one month!!! What is going on????”
$2,755.34 would pay for many visits to a good naturopath, kinesiologist/nutritionist, acupuncturist, osteopath, or chiropractor as well as pay for top grade supplements and bloodwork to determine nutritional status. This being a business dominated culture, insisting on a cost/benefit analysis makes good “business” sense – for the patient.
It makes sense scientifically as well. Consider the work of Professor George Ebers, Oxford University who wrote on March 12, 2012 that there are (my emphasis)
“ major doubts about the outcomes used in MS trials. This is not a matter of opinion really since they have been subjected to careful study by the Sylvia Lawry Centre in Munich using results from some 40 trials, and have also been carefully evaluated in our studies on the natural history of MS where approx. 1000 patients were followed untreated for nearly 30 years on average. This population evaded so-called disease-modifying drugs as accrual ended in 1984 and by the time they were being promoted they were either too disabled to be considered or had done too well to want them.
In the first instance relapses were unrelated to long term outcome and surely no study should now be published with this as the outcome nor should studies be done in which patients are subjected to risk where this is the primary outcome. It is clearly unethical by consensus criteria, which reasonably insist that the outcomes have to be meaningful for risk to be taken on, otherwise no result of value to patients can come out of such trials. This result is supported by there being little from long term followup of the original treatment trials to indicate that relapses are a meaningful indicator of treatment effect when long term disability is considered. After all Long Term disability is the overwhelming medical social and economic impact of MS.
When the Sylvia Lawry results became apparent the response of the International Federation of MS Societies was to withdraw their funding…
rather than saying the outcomes are worthless it seems more appropriate to say they have not been validated. Frankly this is damning enough and if patients have been promised benefit in the long term, this is overstating the evidence…
Prof GC Ebers
Sylvia Lawry founded the US National MS society USA in 1946 and by 1967 the worldwide Multiple Sclerosis International Federation (MSIF) with headquarters in London.”
Quotes taken from Lesions and Relapses--Part One - Facebook
https://www.facebook.com/...multiple-sclerosis/.../101...by
Marie A. Rhodes, author of CCSVI as the Cause of Multiple Sclerosis
(Part Two of Lesions and Relapses is worth reading as well.)
Dr. Ebers didn’t stop there.
On March 21, 2013 it was announced that he had been chosen to receive the National MS Society/American Academy of Neurology’s 2013 John Dystel Prize for Multiple Sclerosis. This freed him to give a lecture titled “Critical Review of outcomes used in MS clinical trials” which was posted on You Tube November 4, 2013 by the European Medicines Agency. www.youtube.com/watch?v=OqY-_K1fYJY
(see blog entry for May 23, 2014 Vitamin D, Veins and Epstein Barr Virus)
His heresy was thus twofold.
To be continued
Tags: Multiple Sclerosis, MS treatment, Professor George Ebers, DMDs,
Cliquez ici pour modifier.
disease, probably MS, step back and relax, at least you don't have a brain
tumour. And stress and anxiety will only make matters worse. Imagine the blood
backing up, flooding your brain and/or central nervous system. You have to stop
that reflux as soon as possible. That means RELAX. All the diagnostic tests in
themselves are stressful, so step back from all that and begin to inform yourself. I believe what is called MS is essentially a dysfunction of the blood/cerebrospinal fluid circulation bathing the central nervous system (brain/spinal cord). There are multiple reasons for this dysfunction which, once discovered, will determine the preferred treatment. But first, one should be certain that one has been properly diagnosed. Numerous infectious agents mimic MS. Lyme disease comes to mind. Since their treatment is usually straitforward (antibiotics), one may be able to stop right there.
Emergency treatment may be prescribed to stop the “attack”. However, once recovered from the crisis, a decision will have to be made about DMD (disease modifying drug) treatment. Before making a decision one might well do a cost/benefit analysis, cost being understood both in terms of one’s health as well as one’s finances. Steroids used to reduce inflammation can lead to avascular necrosis in which the bones die, leaving the victim with crushed joints and in constant pain. Immunosuppressive drugs leave the patient open to a deadly brain infection known as PML (Biogen Idec’s drugs Tysabri and now Tecfidera come to mind). And don’t find yourself in the position of mrsmomnurse who writes about a Tysabri infusion on Thisisms Oct 22, 2014
“ I have just received a bill from Kaiser...charges = 13776.70, Insurance paid = 11021.36, My out of pocket = 2755.34. This is for one month!!! What is going on????”
$2,755.34 would pay for many visits to a good naturopath, kinesiologist/nutritionist, acupuncturist, osteopath, or chiropractor as well as pay for top grade supplements and bloodwork to determine nutritional status. This being a business dominated culture, insisting on a cost/benefit analysis makes good “business” sense – for the patient.
It makes sense scientifically as well. Consider the work of Professor George Ebers, Oxford University who wrote on March 12, 2012 that there are (my emphasis)
“ major doubts about the outcomes used in MS trials. This is not a matter of opinion really since they have been subjected to careful study by the Sylvia Lawry Centre in Munich using results from some 40 trials, and have also been carefully evaluated in our studies on the natural history of MS where approx. 1000 patients were followed untreated for nearly 30 years on average. This population evaded so-called disease-modifying drugs as accrual ended in 1984 and by the time they were being promoted they were either too disabled to be considered or had done too well to want them.
In the first instance relapses were unrelated to long term outcome and surely no study should now be published with this as the outcome nor should studies be done in which patients are subjected to risk where this is the primary outcome. It is clearly unethical by consensus criteria, which reasonably insist that the outcomes have to be meaningful for risk to be taken on, otherwise no result of value to patients can come out of such trials. This result is supported by there being little from long term followup of the original treatment trials to indicate that relapses are a meaningful indicator of treatment effect when long term disability is considered. After all Long Term disability is the overwhelming medical social and economic impact of MS.
When the Sylvia Lawry results became apparent the response of the International Federation of MS Societies was to withdraw their funding…
rather than saying the outcomes are worthless it seems more appropriate to say they have not been validated. Frankly this is damning enough and if patients have been promised benefit in the long term, this is overstating the evidence…
Prof GC Ebers
Sylvia Lawry founded the US National MS society USA in 1946 and by 1967 the worldwide Multiple Sclerosis International Federation (MSIF) with headquarters in London.”
Quotes taken from Lesions and Relapses--Part One - Facebook
https://www.facebook.com/...multiple-sclerosis/.../101...by
Marie A. Rhodes, author of CCSVI as the Cause of Multiple Sclerosis
(Part Two of Lesions and Relapses is worth reading as well.)
Dr. Ebers didn’t stop there.
On March 21, 2013 it was announced that he had been chosen to receive the National MS Society/American Academy of Neurology’s 2013 John Dystel Prize for Multiple Sclerosis. This freed him to give a lecture titled “Critical Review of outcomes used in MS clinical trials” which was posted on You Tube November 4, 2013 by the European Medicines Agency. www.youtube.com/watch?v=OqY-_K1fYJY
(see blog entry for May 23, 2014 Vitamin D, Veins and Epstein Barr Virus)
His heresy was thus twofold.
- The study of 1,000 patients over a 30 year period revealed that relapses are unrelated to long term outcome.
- His 25 year study of Disease Modifying Drugs revealed they don’t stop descent into disability.
To be continued
Tags: Multiple Sclerosis, MS treatment, Professor George Ebers, DMDs,
Cliquez ici pour modifier.
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