MS FREEDOM
I write this book to explore the research I undertook after learning about the blood circulation disorder known as CCSVI which is considered by some to be the principle cause of MS . I eventually learned scientific research has revealed that ANYdisruption of fluid bathing the central nervous system (blood, cerebro-spinal, lymphatic, glymphatic) can cause “MS” symptoms. And with this in mind one can consider an effective treatment.
Standard MS lobby – Neurologists and Big Pharma – oppose this theory, instead proposing Disease Modifying Drugs DMD to treat the inflammation and damage to the myelin sheath typical of MS. However, I believe they are treating the damage CAUSED by the fluid circulation disorder rather than preventing it. Healing requires understanding and overcoming the fluid circulation obstructions and then healing damaged tissue. It’s a complicated balancing act to avoid being poisoned while finding alternative care.
It has been sixteen years since Professor Zamboni posted his CCSVI theory on the internet (December 2008) suggesting that MS is in fact a blood circulation disorder impacting the brain. I first heard about his “Liberation Therapy” on the site Daily Kos summer 2010. 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 angioplasty 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 (electrical stimulation) acupressure treatment on myself (see Acupuncture blog). 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 had prepared to order steroid treatment. (See Dr. Pallis blog). Opening the flow of blood/fluids was the best treatment.
In the USA the first CCSVI angioplasty treatment performed at Stanford Medical Center proved a great success. After arranging the experimental procedure for her composer husband Jeff Beal March 2009, Joan Beal launched her blog « The Vascular Connection ». Yes, her recommended treatment protocol for her husband’s MS included diet modification and continued use of the MS drug Copaxone. But Joan believed that by opening blood circulation through Jeff’s jugular veins, his MS was effectively « cured » which allowed him to resume normal life activites.
This early success triggered a tsunami of interest in the MS community. Unfortunately Jeff Beal’s recovery proved illusory for many. Outcomes varied. Perhaps one third of patients knew impressive recovery of function after angioplasty, one third minor recovery, and one third none at all. Maybe one fourth of MS patients suffer from skeletal obstructions (bones, muscles, arteries) of blood/cerebro-spinal fluid flow which means ballooning the veins might injure them without relieving the obstruction. Also venous anomalies aren’t specific to MS patients though scientific research has shown that blood circulates more slowly through MS brains than normals. Once dilated, the veins could re-stenose thus obliterating the improvements. And after a stent originally designed for arteries lodged in the heart of a patient which necessitated surgery, the use of stents was abandoned. Joy, relief, heartbreak, frustration - emotions were as varied as the outcomes. I for one didn’t want to take the risk of angioplasty in the USA without American health insurance (mine covers France).. Also, I felt I could keep the blood/spinal fluid flow open through manual treatment – massage, acupuncture, osteopathic or chiropractic manipulation and TENS acupressure. And, as it turns out, I was right as long as treatment was available. The recent lockdown proved disastrous for me in that sense.
In spite of some impressive recoveries after angioplasty, treatment of MS as a CCSVI disorder met with skepticism and eventually strident opposition from the dominant Neurology/Big Pharma lobby. By 2012 these special interests influenced the American FDA to effectively ban the treatment for MS patients. While relatively safe and legal, this meant MSers had to pay out of pocket to get treatment since medical insurance refused to pay for an “experimental” procedure. The FDA shut down the Hubbard CCSVI registry in 2012 thus launching an ongoing witch hunt against any Interventional Radiologist (IR) who treated MS as a blood circulation disorder. The renowned IR Salvator Sclafani finally moved his CCSVI treatments to a Polish clinic.
When MS Neurologists derisively mocked IRs as plumbers, they weren’t altogether wrong. The vascular pathology in MS can be more complicated than simply opening a « plugged » tube. A venologist in Southern California Dr. Owiesy has observed that when the middle layer of the vein composed of smooth muscles go into spasms, blood flow is obstructed. Again the problem resides “exterior” to the vein, not “interior”. The veins may be weak or somehow defective, but the mechanism which shuts off the blood flow isn’t “intima”. This corresponds completely to my experience. The treatment? Dr. Owiesy administers a mixture of dexamethasone/lidocaine/thiamine in the area around the Internal Jugular Vein in order to relax and open it. Apparently outcomes have been impressive, risks and expense minimal (though I’ve never tried it.)
However, one may not even need this medical drug solution. A non-inflammatory diet/supplements alone may prevent the release of molecules which lead to spasms and constricted veins. The known negative role of C-Reactive Protein and Birth Control Pills in MS can be understood by looking at the veins, the endothelium and now the veins smooth muscle layer. Dr Owiesy’s observation that veins can « shut off » through stress for instance tends to cast in doubt the mechanistic approach of angioplasty. Anyway, the problem does not lend itself to an easy solution, and one size fits all clinical trials cannot provide a simple « answer ».
My interest here is two fold : 1) I hope to address the CNS Fluid Circulation disorder in MS in its complexity and 2) I will address how events since 2020 illustrate that Big Money has « captured » medical science and regulatory agencies to the detriment of Anglo-European patients such as myself. For example, the drug companies are not going to invest in a study to reveal the efficacy of Shiatsu massage in halting a MS relapse even if that solution may be superior to steroids. We need to take matters into our own hands, find the help we need and side step those who would do us harm.
Previously published on my site mscureenigmas.net
https://www.mscureenigmas.net
MS FREEDOM
Re: MS FREEDOM
Thank you that was very well written and very informative.
Re: MS FREEDOM
Thank you for your encouragement.