Welcome! This blog contains research & information on lifestyle, nutrition and health for those with MS, as well as continuing information on the understanding of CCSVI and cerebral hypoperfusion. This blog is informative only--all medical decisions should be discussed with your own physicians.

The posts are searchable---simply type in your topic of interest in the search box at the top left.

Almost all of MS research is initiated and funded by pharmaceutical companies. This maintains the EAE mouse model and the immune paradigm of MS, and continues the 20 billion dollar a year MS treatment industry. But as we learn more about slowed blood flow, gray matter atrophy, and environmental links to MS progression and disability--all things the current drugs do not address--we're discovering more about how to help those with MS.

To learn how this journey began, read my first post from August, 2009. Be well! Joan

Saturday, April 19, 2014

"Unproven" Treatments for MS

When MS specialists discuss treatment modalities for people with MS, they use a specific phrase to refer to disease modifying drugs, which have been through the pharmaceutical trial process.  These MS therapies are referred to as "proven treatments."  Simply, this means is that the drug has been clinical trialled in a double-blind, placebo controlled trial.  This is considered the gold standard for proving a treatment is effective.
http://www.medpagetoday.com/HOTTOPICSNeurology/Neurology-Videos/455

But this does not mean is that the drug actually does anything to slow progression of MS.

It simply means the drug is "proven" to slow relapses and new lesions when compared to placebo.  This does not mean it is proven to slow gray matter atrophy, to help with symptoms, or slow disability or progression.

Neurologists will steer their patients towards these "proven treatments", because they have attended symposia and conferences where only the best, cherry-picked results of clinical trials are released.   Side effects are often down-played, because MS is such a devastating disease.  They will hear about reduction in relapses and reduced enhancing lesions on MRI.  They will be told this treatment is proven, and they will receive incentives for prescribing these medications to their patients.

But what of the "unproven" treatments for MS?  These are often lumped together by MS Societies and neurological organizations as "alternative treatments" and discussed with barely disguised disdain. But that doesn't mean these treatments don't help people with MS.  Nor does it means there isn't published science regarding these treatments, showing their efficacy.  It just means pharma does not sponsor the placebo controlled clinical trials.  No one is paid to tell you about an alternative treatment.
http://ccsviinms.blogspot.com/2010/01/the-alternative-connection-january-2.html

Here's a recent example.  Aerobic exercise increased brain size in people with MS 16.5%, and improved memory 53.7%.  It's been shown to be effective, and is "proven" in scientific research.  There are no toxic side effects.  Yet exercise is still called "alternative" by MS specialists.
http://ccsviinms.blogspot.com/2013/11/a-body-in-motion.html

It is impossible to have a double blind placebo controlled trial for venoplasty and lifestyle modification which includes endothelial health, whole food nutrition, exercise, smoking cessation, meditation and UV ray therapy.

It is impossible to have a placebo-controlled trial for a new life.

Where does this leave us?  With a lot of "unproven," anecdotal evidence that has been accumulating for seventy years.

Dr. Swank came up against this brick wall in the 1950s.  He had plenty of anecdotal evidence that his patients--who were on a low fat diet and staying physically active--did better.  They had slower MS progression and remained mobile into old age.  But medical science would not accept his evidence, because it was not from placebo-controlled clinical trials.  Dr. George Jelinek and Dr. Terry Wahls come up against the same brick wall today.  Dr. Paolo Zamboni created a furor, by suggesting that these "proven" MS treatments were merely going after a secondary reaction of the CNS due to slowed venous return from the brain.  His CCSVI research, although proven to be relevent to MS and neurovascular disease, resulted in the most heavily debated "unproven" treatment.

I live with someone who was told- at his MS diagnosis seven years ago- that sadly, he would most likely not be walking much longer.  As his neurologist reviewed his lumbar puncture and MRI results, my husband was told that his MS, which had been diagnosed in his forties with many enhancing lesions, was the type shown to be rapidly progressive in men.  His neurologist was sorry that she could not prescribe the most effective, proven treatment, Tysabri--because it had just been taken off the market by the FDA due to (at that time) the deaths of a few patients.  She suggested Copaxone, another "proven" treatment, and sent us on our way, with the advice to "do everything you can right now!"

Seven years later, Jeff visited his neurologist for a check-up last week, where he told her of his recent trip to Israel and hike up to the top of Masada.  He discussed his mountain biking, hiking and active lifestyle, which he credits to his successful venoplasty at Stanford University in 2009 and his new life--full of phytonutrient rich food, UV rays, stress reduction and aerobic exercise.  All "unproven" treatments that have changed his MS course.  His gray matter atrophy has been reversed, he has had no further MS relapses in seven years.  "You are very lucky!", says his neurologist.  His health and MS disease cessation is called an anomaly, because there was no placebo-controlled, age matched patient to compare him to.

Like thousands around the globe, Jeff has used "unproven" treatments to regain his health.  Sadly, these treatments will remain "unproven."  They will be discussed in a neurologist's office with an eye roll and disdainful laugh.  The way Dr. Aaron Miller mocked me when I told him two years ago that Jeff had returned to downhill skiing.

"Ha!  You're kidding!  You still believe in CCSVI!  Hope your husband keeps skiing!",  Dr. Miller said to me with a cold laugh as he turned away from me, and walked back into the AAN conference meeting.  Back into a gathering of MS patients and neurologists, where he would tout the newest "proven" treatments for MS.

Two years later, Jeff's doing even better, Dr. Miller.  And yes, I still believe.  The science will eventually clarify MS disease progression.  In the meantime, we'll continue to live well.

Joan




9 comments:

  1. Boy, there sure are a lot of anomalies out there when it comes to CCSVI! I've been told I'm one. How many does it take to become a normality? I could list several others whom I'm sure have been told the same. There was no "proven" treatment available for me. The "unproven" treatment of venous angioplasty for CCSVI to relieve MS symptoms proved itself to me!

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    1. Yes, you are a walking anomaly, Lori! The fact that you had MS for decades, and were SPMS also meant there were no "proven" therapies for you. Proud of you for moving every day and living well. Thanks for sharing your journey with all of us--

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  2. This is exactly why I haven't been able to embrace the so called advocacy groups. They really are there to raise money. Yes, I am sure they do a lot of good things for MS patients, but they are not in this to find a cure. I have come to realize that you have to fight for yourself. We are the ones who live in these MS bodies 24/7.

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    1. Keep moving, eating well and taking care of yourself, Jean. One advocacy group which is looking for REAL answers for pwMS is the International Society for Neurovascular Disease. www.isnvd.org These researchers want to understand how cerebral blood flow is involved in disease. And they need our support, since there is no pharma involvement. Take care.

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  3. Hi Dear Joan. What would we do without you......a rhetorical question, btw. I am pleased that you named a doctor who was less than responsive to Jeff's healing journey. I have often thought that we all need to quote and name these doctors, just as we quote and name the doctors and researchers who listen and respond respectfully and support and encourage us doing new and yet not "proven treatments". This is a powerful action on our part, exposing those less than supportive and giving us encouragement naming the groups and doctors and researchers who do support us. Bless you for all your encouragement and support too Joan.

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    1. thanks, Bev. You are my hero--for all you do for your son Greg. I don't like to single out people, but Dr. Miller's atitude towards me and all of CCSVI research was shocking. I don't understand how anyone could laugh and mock the healing journies of people dealing with MS. It's not an intellectual exercise----it's peoples' lives. I'm afraid some MS specialists forget this fact. Thank YOU for always being an encouraging force. xo

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  4. Thanks, Joan. It is terrible that doctors can lie straight faced about this. Dr Arata treated my wife in California with angioplasty. Results astonished me and lots of other people. (I put videos of before and after balance tests, etc. online). I find it extraordinary that there no camera crew has ever spent a week at his treatment center interviewing patients before they are wheeled in barely able to stand and the next day, post op when they are standing on one leg doing thai dancer poses. That was what my wife did! Nobody knows exactly why angioplasty works so well and so quickly but we have to accept the evidence of our own eyes. Videos from Dawn Skinner, Denice, Kerri Cassidy in Australia and many many others are clear and unequivocal video proof that it works. Brian

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    1. I'm happy for Jade's continued healing. Make sure to document her improvements on EDSS and MRI, and keep her medical records. This is the documentation which will bring the research forward. We now have five years of MRIs and neurological evals. since Jeff's venoplasty, with no new lesions, a reversal of brain atrophy and a return of balance (and downhill skiing!) The science will prove the efficacy of this treatment.

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