vesta wrote:Had I known this years ago, I wouldn't need a cane today.
How do you know? Perhaps you would be no better off.
According to Dr. Sclafani, the balloon to expand the vein was too small and all MS cases (RR SP PP) were treated the same even though they are very different
Someone is certainly welcome to attempt a different type of clinical trial using a different procedure or with different patient selection. Technical factors do matter. If subgroup analysis revealed that the procedure was effective in one of the MS subtypes, we would hear about it.
As for centenarian100's data, she (?) has a chosen a study of no more than 2 years and all that has been studied is if the drug suppresses the immune response, not MS. Dr. George Eber's long term studies have revealed that these drugs don't work to prevent disability which in his opinion should be the criteria of treatment "success". He believes people are being misled by his own profession (Neurology), and after his study came out, he was totally shocked that the study was ignored. So much for respect for science.
Ebers is correct in that lesion burden and relapse rates correlate poorly with long term disability. yet, there is some good evidence that disease modifying therapies do have a long term effect on disability
For instance, in the natalizumab (tysabri) extension studies, the placebo group fell behind on disability measures and never caught up when they were measured at 5 yearshttp://multiple-sclerosis-research.blog ... study.html
It's not really practical to do long term studies because you cannot retain patients in the study, and once the drug is proven to be effective, there is no longer clinical equipoise, so it is unethical to give placebo (at least in countries where treatments are readily available)
After I wrote “Had I known this (CCSVI theory) years ago I wouldn’t need a cane today.”
Centenarian100 wrote “How do you know? Perhaps you would be no better off.”
My response? “I remember when I began to limp in 1993 I was VERY upset and crying. It appalls me to think a simple back massage or TENS treatment would have stopped the blood reflux to put an end to the neurological symptoms. Ever since summer 2010 when I read about “Liberation Therapy” I’ve reacted to an upset which inevitably leads to neurological symptoms by getting the fluids to flow. That puts an end to the neurological symptoms.
ElliotB asked what I do stop an attack. I replied I ask for a brief back/shoulder massage or do a TENS acupressure treatment on myself. I would revise this response by saying that if one has a serious skeletal obstruction of the internal jugular vein, for instance, the TENS acupressure treatment or massage WONT WORK to open the stenoses. I explained what I do personally to stop an attack, but my solution may not work for others. A vein obstructed by a bone spur won’t open with these treatments.
I don’t believe I have such an obstruction. Dr. Owiesy’s idea that the autonomous nervous system triggers a spasm in the draining vein thereby impeding blood flow corresponds completely to my experience.
I will direct your attention to donnchadh who was posting on the CCVBP thread. An accident caused a bone to obstruct his IJV. He underwent angioplasty for CCSVI which didn’t work. He found a neurosurgeon who shaved down the bone spur, thus freeing the vein. Another venoplasty failed to open the blood flow through the vein because tissue had built up to plug it. Donnchadh was left with a 10 cm plug in the vein which was ruining his life, and apparently a section of new vein can’t be spliced onto the old.
Sometimes it is the cerebro-spinal fluid obstruction which injures the CNS. In fact I believe most PPMS cases fall into this category and once the MS begins to Progress (SPMS) poor CSF flow or direct pressure on the spine injures the axons. Why? As the nervous system progressively degenerates the body structure loses its integrity putting pressure on the spinal cord/CSF fluid causing even more damage in what I call a “positive feedback loop”.
As examples I will direct your attention to Robni who suffered injury “heading the ball” as a boy playing soccer in the Netherlands. Uprightdoc (tragically deceased in 2016) was following Robni’s case under CCSVI CCVBP thread. Another case – Dania whose spine was injured as a young woman in a riding accident. She underwent angioplasty for CCSVI only to see her IJV’s shrivel and die. The vein remained blocked because in fact it was the skeleton causing the stenosis.
I believe one should insist on a FONAR upright MRI to see the condition of the spine and CSF/blood. A neurologist who orders a simple spinal MRI is not doing his job because obstructions are not usually visible in a recumbent position. IF there is an obstruction, specialists like Chiropractors should be called in to see if the disorder can be corrected without surgery. In any case, angioplasty would be a bad idea.
AT PRESENT MS IS BEING TREATED AS THOUGH EVERYONE HAS A SKELETAL OBSTRUCTION TO THE FREE FLOW OF THE CNS FLUIDS AND THERE IS NO OTHER SOLUTION THAN DMD'S TO TREAT THE IMMUNE SYSTEM REACTION.
HOWEVER, if no such obstruction exists one should consider solutions to the CCSVI problem. Dr. Owiesy’s idea that a spasm in the vein impedes blood flow suggests a simple massage to release the spasm or TENS acupressure or various simple solutions. His administration of medication in the area surrounding the vein may provide a more permanent solution.
Angioplasty is another solution which worked very well for the lucky Stanford MS patients Jeff Beal and Mark Miller (with stents). Maybe others as well. Unfortunately the obstacles to research mounted by the Neurology/Big Pharma lobby have retarded development of the procedure as well as stents and vein splicing techniques? The FDA even forbade the Hubbard Foundation to keeo a CCSVI registry which could have provided much needed information allowing MS patients to make an informed decision.
It’s time for these vested interests to just get out of the way.
Centenarian100 suggests (on another thread) that Dr. Zamboni has a vested interest in promoting his idea with the additional hope of financial gain. I will point out that Dr. Zamboni is a European University Doctor. Values differ. Doctors in his milieu find financial motives in medical science to be unprofessional and vulgar.
In years1987 and 2000 WHO (World Health Organization) did a comparative study of world health care systems. France came in Number One, the US ranked at 37. The US ranked No 1 in technology, but other criteria – infant mortality, longevity etc they ranked at the bottom of the class for “developed” countries. At the time a French Doctor wrote that French medicine aspired to “humanist” values. (I can’t remember his exact words, but it was an obvious jab at the USA system.) WHO stopped ranking health care thereafter, presumably under pressure from the USA which had ranked so poorly.
Certainly Dr. Zamboni hopes to be recognized for his insight, as well he should. As motives go, that is a noble one not to be sneered at.
And any Neurologist who takes a kickback from a drug company to prescribe their medication is in my opinion contemptible.
I am suggesting that a massage which relieves a vein spasm may stop an RRMS attack. Is that so outrageous? If it doesn’t work, no harm done, unlike other potential solutions such as steroids. (One problem, MS is a high status disease because of the specialty – Neurology – and all the fancy equipment used to diagnose it and the high priced drugs. The disease category might be demoted if the best therapist is a Masseur.)
It may be that various remedies which seem to help MSers such as LDN do in fact regulate the autonomic nervous system to prevent the spasms. Why not? A field for future study?
In the meantime MSers need to take care of themselves. For starters I would insist on a FONAR upright MRI to ascertain the condition of the spine and spinal fluid flow and have a Chiropractor look at it. I would (do) treat myself with a TENS acupressure daily and at first signs of an attack. I get regular massages, Osteopathic treatment or Acupuncture treatments. Follow a individualized Diet, Supplements.
In conclusion, if a skeletal obstruction prevents free flow of blood or CSF fluids, DMDs may be the only solution. I don't know if researchers took into account damage done by back jets of blood, CSF fluid into the CNS when they developed their drugs. That would seem an obvious consideration. To maintain a healthy CNS which is periodically damaged by setbacks (yes, during sleep for instance I have the impression stagnant blood flow injures brain tissue) I use optimal nutrition, suppléments and raw vegetable juice.
Best regards, Vesta