I admit I haven't been working much on the MS issue over the past 2 years. So now I must refamiliarise the subject and resume work. Also try to integrate the various elements to make a coherent story of Living with Multiple Sclerosis. .
Any suggestions my readers may have are most welcome.
Opening sentences are very important in determining a books purchase. So for starters I will try the following:
I now realize I abruptly stopped my first MS "attack" April 1980 by getting a Shiatsu massage at the Kabuki Hot Springs in San Francisco.
And I now know why.
This story of discovery began when I read about Professor Zamboni's “Liberation Therapy” on the Daily Kos site summer 2010. It had been nearly two years since Professor Zamboni posted his CCSVI theory on the internet (December 2008) suggesting that MS is in fact a blood circulation disorder of the brain. Since then scientific research has revealed that disruption of ANY fluid bathing the central nervous system (blood, cerebro-spinal, lymphatic, glymphatic) can cause “MS” symptoms by damaging the Central Nervous System (CNS)
Professor Zamboni initially proposed using the Sonogram to diagnose veins running from the brain towards the heart – the Internal Jugular Veins and the Vertebral Veins. Once the narrowings/blockages in these veins were observed he recommended opening the stenoses with balloon venoplasty and, if so indicated by the venogram, the chest azygos vein as well. In his paper “CCSVI – A New paradigm and therapy for multiple sclerosis” posted on July 25, 2010, the Interventional Radiologist Salvatore J.A. Sclafani, MD refers to Dr. Zamboni’s work by writing “Chronic cerebrospinal venous insufficiency (CCSVI) is a hemodynamic condition in which cerebrospinal drainage is altered and inhibited. Outflow obstructions of the internal jugular veins (IJVs), vertebral veins, and/or azygos vein ( AZV) and their tributaries result in stasis or reflux of these outflow veins and redirection of flow through vicarious circuits…
On reading this I immediately asked my husband to massage my neck/back, both of us standing. He was to work from the head down to the waist while we both visualized the blood flowing down from my head to circulate through the heart. I felt better at once as the head congestion lifted. Late that summer stress triggered a MS “attack”. I wondered with a heavy heart how much ground I would lose. That evening I performed a TENS acupressure treatment on myself (see Acupuncture blogs September 10, 13, 2013). I was shocked the next morning to realize the attack had abruptly stopped. Not diminished, not attenuated, but stopped. Years later when I studied my journals and records I realized a Shiatsu massage had stopped my first major attack in 1980 just when my Neurologist prepared steroid treatment. (See Dr. Pallis/Shiatsu blog May 2013). Opening the flow of blood/fluids was the best treatment. I also understood why an acupuncture treatment in San Francisco had stopped an attack within 2 hours of onset. What did that have to do with an Auto immune "attack"?
The initial hopeful excitement in the MS community triggered by this discovery has since died down. There were problems with the venoplasty procedure itself. There existed multiple varied reasons for the CNS fluid circulation disorder, thus varied treatments. But above all Liberation Therapy threatened the entire MS auto immune theory, the IRMs, the steroids, the DMDs, the Neurology professional training. More was done to discredit the idea then to understand why it worked for some and how to improve treatment.
I have never taken the MS disease modyfying drugs. I began early with Chiropractic, Acupuncture and eventually to astounding success, a Kinesiologist protocol of de tox, diet, supplements, energy therapy treatments. osteopathy, acupuncture.
Unfortunately this isn't the end of the story. The COVID 19 lockdown in 2020 interrupted the treatments leaving my body structure "twisted" such that the blood/cerebriospinal fluids circulate poorly to cause a rapid Progression. At least that is how I understand the ground I have lost over the past 2 years. If I could get a FONAR MRI to see how fast the CNS fluids circulate and if, where there are blockages, I might be able to find a therapist and solution. However in France there are no FONAR MRIs (5 in Germany, 2 in England, 1 in Switzerland - there are over 150 in the USA where Chiropractors enjoy an important status.) Since I now live in a small French village, my options are limited.
I now think the early fluid circulation issues most characterise RRMS. Progression concerns more structural pathologies. And yes there must be an infectious agent which eats away at the CNS. So within those limits I'll try to minimize my own MS Progression. And write this book to 1) help my own self healing resolve which might 2) help others think through their own history and help themselves.
Tags: Dr Zamboni, CCSVI, Liberation Therapy, Multiple Sclerosis, Kinesiology, Covid 19, Shiatsu Massage, Dr Pallis, Acupuncture