I have just revised my main paper which I’ll reprint here.  Hopefully it is more lucid, shorter and reads better than the previous one.  I now have to write a separate Resources post.  Unfortunately not everyone has access to the same Resources.  California is the heart of alternative medicine in the US, and even my former San Francisco HMO now offers acupuncture – probably because their clients want it, being competitive requires the option.  If you live in a Conservative state, you may be out of luck.  Texas has just sanctioned an Interventional Radiologist for practicing venoplasty for CCSVI on MS patients.  His main practice is elsewhere, the State has harmed his patients more than him. See http://www.yourhoustonnews.com/memorial ... 1a460.html
Quote:
McGuckin, James Frederick, Jr., M.D., Lic. No. N1760, Philadelphia, PA

On June 10, 2016, the Board and James Frederick McGuckin, Jr., M.D., entered into an Agreed Order requiring Dr. McGuckin to comply with all terms as required by the Agreed Order issued by the Washington Medical Quality Assurance Commission. Dr. McGuckin shall not perform angioplasty and stenting procedures of the venous system for chronic cerebrospinal venous insufficiency (CCSVI) procedures or multiple sclerosis patients in the state of Texas. The Board found Dr. McGuckin entered into an Agreed Order with the Washington Medical Quality Assurance Commission which was based on the determination that Dr. McGuckin performed CCSVI procedures on patients without ensuring Bio-Med IRB obtained an approved Investigation Device Exemption (IDE) from the Food and Drug Administration.
Cece of Thisisms.com posted the above on June 16, 2016.

Dr. McGuckin is a Canadian Interventional Radiologist who wrote the following
§ I have personally studied hundreds of patients with MS. They all have had CCSVI. § The majority of these patients are citizens of Canada, and most of them are enrolled in the Hubbard Registry. § None of these MS patients were normal on venography and all had truncal venous abnormalities. These deformities include malformed valves, significant narrowing, and membranous tissue or webbing inside the vein. Over 80% of patients have had a positive response to the treatment with a reduction in their symptoms. § The focus of MS research should include discovering the etiology of MS, improving treatments for MS patients, evaluating the safety and efficacy of treating the vascular abnormalities associated with CCSVI/MS, and developing therapies that augment and preserve the improvements developed through endovascular treatment. 
Date unknown. The FDA closed down the Hubbard Registry in 2012. I believe that in itself was a semi-criminal act. Why did they do it? The Registry would have given CCSVI patients and practitioners a true idea of Venoplasty outcomes. 
I believe one should avoid the MS diagnosis.  It is of little use and will do great harm if one wants a Medical Insurance Company to pay for the CCSVI Venoplasty procedure.
I think one should ask to be diagnosed with a Neurological disorder of unknown origin.  Forget the MS (Anyway, that wouldn’t be a false statement, for the Neurology profession, the origins of the MS ARE unknown.)

The following quote comes from the May 23, 2014 blog post “Vitamin D, Veins, and the Epstein Barr Virus” from my site MS Cure Enigmas.net   www.mscureenigmas.net/

On March 21, 2013 it was announced that Professor George C. Ebers, MD, of University of Oxford in London, had been chosen to receive the National MS Society/American Academy of Neurology’s 2013 John Dystel Prize for Multiple Sclerosis… The Neurology Community was less pleased with Dr. Ebers when on 17 October 2013 he gave 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

Dr. Ebers basically said that current MS medications do NOT prevent descent into Progressive MS disability. See my blog (MS Drug/MRI Fallacy January 5, 2014)   DMD’s treat the inflammation of the early RRMS. Once the Progressive stage sets in, they don’t work and decline sets in. Apparently the brain atrophies as do the veins draining the brain. It has been demonstrated that blood transit time in MS patients is one half that of normals. The question is one of perfusion i.e. blood flow, volume and mean transit time. ALL brain fluids contribute to adequate blood flow.

Dr. Ebers has engaged in debates denouncing (politely) the failure of Neurologists to face facts about DMD efficacy, arguing that the CCSVI controversy had revealed to what extent MS patients don’t trust their Doctors. If one obediently follows standard therapy only to finish in a wheelchair, by which time the CCSVI option and/or the “nourish the grey matter” option are less viable, one will have made a mistake. I believe current research delays owing to ideology and vested interests border on criminal.”



CCSVI MS: A FUNCTIONAL DISORDER UPDATED

It has been over seven years since the 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, cerebrospinal, lymphatic, glymphatic) can cause “MS” symptoms. This site is intended to share the “liberation” I feel as an MSer who no longer needs to fear inevitable doom.

I first learned about “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 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 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 abruptly stopped my first major attack in 1980 just when my Neurologist prepared steroid treatment. Opening the flow of blood/fluids was the best treatment.

I launched my site MS Cure Enigmas.net March 2012 by writing:

“In Multiple Sclerosis blood vessels "deformed" by childhood stress cannot accommodate the blood flow. I believe the immune system is activated by blood refluxes which injure the brain and spinal cord. The origin of the refluxes may be structural 1) CCSVI stenosis (as proposed by Professor Zamboni) and/or cerebrospinal fluid pressure or 2) it may be a stress reaction to toxicity.
Epidemiological studies on MS show that those who grow up close to the equator have less chance to develop MS than those living in latitudes closer to the poles. It is the latitude where one lives before age 15 that counts, not where one lives subsequently.  It is therefore thought that the lack of sunlight leading to a Vit D deficiency is a factor in susceptibility to MS.

But perhaps an equally important explanation of the geographical factor is Winter Cold. 

The shoulders and neck typically tense up under stress thus restricting circulation to and from the brain. Cold weather stiffens the muscles. Winters bring the body aches of colds and flus. Illness itself (e.g. Clamydia Pneumoniae, Mononucleosis) may damage the cell walls and valves of the vascular system.

It is also said that MS patients tend to be high powered, ambitious people. Tensed up in other words. MS cases cluster in northern Europe and North America. Let’s say growing up in a culturally demanding family environment (or in any case stressful) while subject to Cold weather and frequent colds and flus actually compresses and deforms the circulatory system in the child’s developing body. By the time he/she reaches age 15, the damaged blood vessels can no longer accommodate the blood flow. MS first appears in adolescents, seldom in children. Let’s compare the deformity to ancient Chinese footbinding where the tiny child’s foot cannot support the adult woman.

Food intolerances, especially to wheat and dairy products, can further compound the stress. The Neolithic agricultural revolution dates back not much more than 10,000 years, a blink of the eye in terms of biological evolution. Bowel problems are a sure sign of food “stress”. The significant increase in MS cases in Japan over the past 30 years points to food toxicity as root cause.

And the disadvantage of being female. While originally there was no difference in MS incidence between the sexes, over the past 50 years women’s share has increased to the point where up to three out of four MSers are female. What changed 50 years ago? The advent of birth control pills (1960) and hormonal therapies which are known to impact the vascular system adversely.

Maybe the real story behind MS is the damage to the blood vessels caused by growing up in a 1) driven, ambitious or otherwise stressful family environment compounded by 2) a climate of Cold winters which contribute to 3) frequent viral illnesses compounded by 4) an intolerance to the wheat and lactose of a Neolithic diet.”

That analysis is a good beginning, but my thinking has evolved since then.  It is believed that the BigPharma/Neurology lobby pressured the FDA to put a stop to CCSVI treatment for MS outside of research trials in May 2012 thus retarding development of appropriate stents and improvements of the procedure, not to mention depriving MS patients of a well documented cure. Avoiding the damning diagnosis MS, Dr. Sclafani has performed over 500 venoplasties for CCSVI and has found the condition in many more vein types than initially proposed by Dr. Zamboni. He recommends use of the Intravenous Ultrasound (IVUS) to allow the Doctor to best judge the size of the balloon – too small the vein re-stenoses, too large the vein wall may be damaged resulting in thrombosis.  For him the gold standard for CCSVI diagnosis is the IVUS venoplasty itself, the sonogram being inconclusive. Thus he has been able to overcome difficulties which tended to discredit early treatments.

Another issue overlooked at the outset was the skeletal factor, that pressure ON the vein by a bone, muscle or artery may be obstructing blood flow rather than a  problem IN the vein. Chiropractor Dr. Michael Flanagan, author of The Downside of Upright Posture – The Anatomical Causes of Alzheimer’s, Parkinson’s and Multiple Sclerosis estimated that up to 25% of MS cases fall into this category. In this case venoplasty is ill advised since the treatment will not overcome the obstruction and may well damage a healthy vein.

February 13, 2015 PLOS ONE* published a double blind study revealing that it takes twice as long for blood to flow from the heart through the brain and back to the heart in MSers than in normals, this regardless of the MSers condition.  In other words, poor blood perfusion through the brain is a marker for MS, it defines MS.

Consider first that neck/back massages can get sluggish blood flowing in my case.  Matt Embry uses vigorous exercise.  Why should the blood vessels in MSers be so weak that mere muscle tension can disrupt blood circulation? Recent research by Professor Zamboni has found that the endothelium – inner vein wall - cells are absent in the Internal Jugular veins of MS subjects. Without walls the veins could collapse like a flimsy garden hose. Why are these cells missing? Childhood illness, poor nutrition owing to food sensitivities, insufficient Vitamin D ( a form of vein rickets perhaps? A genetic factor specific to MS reinforces the need for Vitamin D.) Whatever the reason, a damaged endothelium is a vital factor.  So the slightest tension may impede blood circulation.  Foods can act as toxins which cause body tension, glutens being a classic example. Antibiotics as well. The flu can cause the entire body to seize up in cramps which seem to shut down my entire body’s fluid circulation leading to terrible MS symptoms. Anything which causes the body to tense up may trigger MS attacks. I don’t think one need look any further than that.

And Latitude? It's the Sun which brings health through Vitamin D AND the release of Nitric Oxide. Nitric Oxide is a vasodilator critical to the development and function of the vascular system (read endothelium again). (Research into Cardiovascular disease – not MS or CCSVI – led to these insights.)  A properly functioning vein wall so critical to blood circulation depends on a healthy life style (diet, supplements, exercise, stress reduction, UV rays). These factors missing during the critical growth period could well lead to a deformed, poorly developed vascular system. The evidence pointing to MS as a circulatory system disease is overwhelming. And the epidemiological factors fall into place.

However, blood is not the only fluid impacting the central nervous system. Obstruction of cerebro-spinal fluid (CSF) which bathes the spine and brain can lead to MS pathology as well. The International Society for Neurovascular Diseases (ISNVD founded in 2011 has done pioneering research into the “interaction between the CSF system and the cerebral venous drainage system”.

I’ve come to think that the 10% PPMS cases exhibit primarily obstructed cerebrospinal fluid (CSF) or direct pressure on the spinal cord itself owing to a damaged, degenerated spine. And the more common RRMS (RelapseRemissionMS) is transformed into the Progressive form as the disease process damages the spine and body structure in general.. (See January 21, 2015 Blog “How RRMS progresses to SPMS”). A complicated interplay of CSF circulation and venous blood circulation suggests that venoplasty may be of limited effectiveness in some patients.

The MS-UK site’s succinct definition of PPMS.
Primary Progressive MS (PPMS) concerns about 10 to 15% of MS cases. In contrast to RRMS (RelapseRemission) cases, the PPMS disease progresses continually without respite after striking an older population (age 40’s to 50’s).  Unlike  RRMS, there is little to no inflammation, there are fewer brain lesions, the lesions which do exist present fewer inflammatory cells, and more are found on the spinal cord than in the brain which leads to mobility problems.  While PPMS cases exhibit less inflammation, there appears to be greater damage to the axons.”

PPMS patients are not included in MS drug research and treatment because both target the myelin damaging inflammation of RelapseRemission MS observed on the MRI, that is to say, the blood reflux (CCSVI).
A point also missing from my original paper is the observed atrophy of brain grey matter as the disease progresses. Blood refluxes damage the myelin white matter which are revealed as MRI lesions during early stage relapses. Eventually the relapses recede as the grey matter deteriorates.  (Recent research reveals that MS disability is related to microbleeds in the brain – another manifestation of the critical importance of a healthy endothelium to prevent breach of the blood brain barrier.)

And finally we arrive at an understanding that increased disability is less caused by white matter lesions than grey matter atrophy, a shrinking brain. This puts in doubt the entire immune suppression drug protocol for MS.

So consider the factors. Is blood flow from the brain obstructed by a venous abnormality? How serious is the obstruction? Will simple body tension collapse the vein and impede blood flow, tension caused by emotional stress, the flu, toxins, poor food? Is there a mechanical obstruction pressing on the otherwise healthy vein? Does cerebrospinal fluid flow obstruction damage the axons, the spinal cord?  Where is the principle obstruction, how should it be treated?  When one considers all the variables, one can understand why venoplasty cannot provide the one and only answer. However, for some it has led to a “miracle” cure.

At this time, Chiropractors familiar with spinal structural conditions are probably best equipped to study, diagnose and even treat skeletal obstructions of blood and cerebrospinal fluid flow through the central nervous system.  Dr Michael Flanagan “upright doc” on the Thisisms.com website (CCVBP), (tragically for MSers now deceased,) recommended use of the COX Technic Flexion-Distraction tables (the most advanced is now version 8) to treat spinal conditions.  NUCCA (National Upper Cervical  Chiropractic Association) Chiropractors specialize in treating the Cervicals and the Atlas Orthogonal (C1). Italian teams of vascular specialists are now studying the phenomonena.

The ideal equipment is the FONAR upright Cine MRI invented by Dr. Damadian – inventor of the original MRI idea - because obstructions in cerebrospinal fluid flow are less likely to be observed by MRIs when the patient is recumbent.   For diagnosis of CSF flow there are apparently 15 FONAR sites in the US and one in London. (http://www.fonar.com/news/052114.htm

Osteopaths work to get the body fluids circulating.  My Osteopath thinks MSers need the combined skills of a Chiropractor – to free any obstructions by manipulating the skeleton – and an Osteopath to get the fluids circulating.  This would include the newly discovered Glymphatic fluid which cleanses the brain during sleep, not to mention the brain’s lymphatic fluid discovered summer 2015.

In conclusion, every effort must be made to stop the blood reflux, stop the relapses, strengthen the veins’endothelium and nourish the grey matter as well as the myelin sheath, the earlier the better. Optimal nutrition, supplements, blood circulation therapies and venoplasty itself if the stenosis is serious all serve this end.

Finally, the Epstein-Barr virus remains dormant throughout the life of MSers after an initial Mononucleosis infection. Did the initial infection damage the endothelium? Does periodic activation of the virus trigger “attacks”? Or do the “attacks” re-activate the virus  because poor perfusion through damaged endothelium leads to oxygen deficiency? (I don’t favor trying to “kill” a dormant EBV Herpes virus with anti-viral drugs.  The original illness may have already damaged the veins and the drugs will only weaken the immune system further. At the most I may try the anti-herpes herbal remedy Larrea tridentata, mainly to prevent a shingles attack. Also, I would never try the HSCT stem cell therapy – recently in the news -  in which the immune system is destroyed with high dose chemotherapy after which stem cells are administered to “reboot” the immune system.  Better strengthen one’s overall health to keep a dormant virus at bay rather than damage the immune system – or risk death - with drugs. That strikes me as an unnecessarily drastic way to detoxify.)

In the meantime, anyone who seriously seeks to heal MS can’t ignore nutrition. Proper diet serves 4 purposes: 1) to prevent body stress - on the vascular system i.e. the blood reflux and/or on the cerebro-spinal fluid 2) to heal and reinforce the endothelium of the vascular system at the cellular level  3) to nourish the brain cells (white matter, myelin sheath, axons, grey matter) especially important if there has been some brain damage and 4) to re-inforce the immune system in order to de-activate a latent virus or bacteria (probably Epstein-Barr virus – cause of Mononucleosis - for me).  One note: before diet change and supplements could work for me I had to go through a profound detoxification  and I needed the help of a naturopath/kinesiologist to do it.

One final note: Consider that you may have Lyme disease or a serious Vitamin B12 deficiency which can mimic MS symptoms.  See Resources section for blood test suggestions.

Even though Dr. Zamboni's insight has come a bit late for me, it has given me a new lease on life. I used to live in constant fear of a debilitating relapse. Now I know what to do to head off a breakdown. Having embarked once again on my diet I feel better and hopeful of improvement in the future. I know that anything which improves blood/brain fluid circulation (swimming, acupuncture, acupressure, massage, kinesiology, osteopathic, chiropractic, any energy therapy – AND fifteen minutes of Sun a day) will make me feel better and prevent a relapse. As I’ve gotten control over the blood reflux into the brain, I’ve come to see the importance of keeping my spine strong and stabilized.  Optimal nutrition and supplements and oxygen can keep my blood vessels as well as the brain’s grey matter healthy. And I need to be ever vigilant in avoiding illnesses which might trigger the latent EBV virus.

I hope other Multiple Sclerosis patients will reflect on their own history and that my experience will be of use in their Healing.

See Resources/Better Blogs for references

Anna Macy
July 28, 2016 

(Version 1  - February 15, 2012. Version 2 – June 8, 2013. Version 3 August 1, 2014. Version - 4 July 1, 2015 Version 5 CCSVI MS Udated - 2016 See earlier versions under pages more...)

Anna Macy is an American writer living in Paris. 

She can be reached at [email protected]

*Cerebral Circulation Time is Prolonged and Not Correlated with EDSS in Multiple Sclerosis    Patients: A Study Using Digital Subtracted Angiography 
http://www.plosone.org/article/fetchObject.action?uri=info%3Adoi%2F10.1371%2Fjournal.pone.0116681&representation=PDF

Tags: Multiple Sclerosis, MS Diagnosis, Functional Disorder, Dr. McGuckin, Dr. George Ebers, CCSVI, Chiropractors, Osteopaths, Dr. Michael Flanagan

A recent quick google search under MS Cure (science alert, healthline, telegraph, newscientist, mirror, medical news today) highlights stem cell research HSCT (Hematopioetic Stem Cell Transplant) described as “unprecedented”, “exciting”, miraculous” “close to curative”.
 
Most of the articles refer to a recent The Lancet article which describes a study of 24 MS patients who underwent the HSCT procedure originally designed to treat Leukemia patients. After extracting stem cells from the MS patient’s own blood, a high dose of chemotherapy is administered to knock out the existing immune system after which the harvested stem cells are introduced to rebuild or “reboot” a new immune system.  It is claimed that 70% of the MS patients were entirely cured while 40% were better. Unfortunately, one patient died and another suffered acute liver complications.  Apparently only patients in an early “aggressive” RRMS were chosen, some after DMD treatment had failed. No Progressive cases were treated. (I didn’t read the full article, these are details taken from brief summaries.)
 
This sounds like a drastic approach to detoxification which I would NEVER try or recommend. Before risking death or being hospitalized for liver failure one might try well documented “cures” using nutritional therapy.  I was CURED of MS between 1985 – 1993 through detoxification, nutrition, nutritional supplements and functional/energy therapies.
 
When I asked my Neurologist to confirm the MS diagnosis for a legal matter in 1990, he refused.  HE SAID THAT SINCE I COULDN’T HAVE RECOVERED FROM MS, I NEVER HAD IT. He recommended against my undergoing the MRI (unavailable in 1980 when I was diagnosed) because it would surely prove negative which would hurt my case if MS was an issue. After the lawsuit was settled, I underwent the MRI as well as the eye exam which both proved positive for MS. However, no handicap was discernable. 
 
In short, a “miracle cure.”
 
No. A perfectly doable cure.  There have been many others, those who follow recommendations of Dr. Roy Swank, Dr Catherine Kousmine, Matt Embry (http://www.mshope.com) or Dr Terry Wahls.  These “cures” are dismissed as “anecdotal”, because they don’t conform to established medical protocols using drugs or exotic procedures. (Dr Terry Wahls, who is currently trying to “prove” the nutritional “cure”’ is being hampered by lack of funding.  Who is going to pay to prove that raw veggie juice “cures” MS?  This “funding for medical research issue” is an illustration as good as any that private interest monopolies don’t promote public welfare.  Rethink current Ideology anyone?)

Anyway, when I moved to France in 1992 I abandoned the diet, and above all lived in a terrible stress. (I believe the stress was the most TOXIC factor in my relapse, and here the vascular connection was paramount. I understood this only after reading about Dr. Zamboni’s “Liberation Therapy” in summer 2012, this revelation being the motivation behind my site MSCureEnigmas.net.)
 
A final comment on the current excitement around this very limited HSCT study.  Chiropractor Dr. Michael Flanagan estimated that up to 25% of MS cases were in fact caused by skeletal or “mechanical” obstructions of central nervous system fluid flow (cerebro-spinal fluid, blood).  Therefore, these patients would only suffer a useless, costly and potentially dangerous procedure only to remain neurologically compromised. (See previous June 14, 2016 blog post on Dr. Flanagan.) 
 
It’s time now for me to resume my personal story as an illustration of an “MS CURE” without drugs or exotic medical procedures such as HSCT stem cell treatment. (I would eagerly support a health enhancing way to repair the myelin sheath, but not a treatment that destroys the immune system.)
 
Below you will find

Chapter Five: The Chinese “Cure” 1982
 
In future:
Chapter Six: In Search of a Solution 1983
 
Chapter Seven: “The Cure” 1984-1985
 
 
CHAPTER FIVE:  THE CHINESE CURE 1982

Early December 1981 my Neurologist finally told me he thought I had MS. Remember, this was before the MRI. The steroid Prednisone was the recommended treatment which I didn’t even consider since it wasn’t a cure. A friend who was acting as a caretaker for an MS victim  had described the ruinous consequences of Prednisone for his client, the physical and especially emotional  toll.  She gained weight, her face assumed a round puffy aspect and she cried all the time. And she continued to go downhill anyway. So what was the point?

December 10, 1981 I dreamt the following:

Walking along a pathway, sinking into the fertile earth almost up to my neck, I found moving forward extremely difficult.  I was forced aside as a pack of people raced past, sirens blaring.  As I sank into the earth I was reminded of planting tulips in the autumn chill. The Tarot card Princess of Disk appeared which I understood as a symbol of fertility and creativity. I was aware  that the illness had forced me off the fast track as the world  rushed past.   

This was December 1981, I set the MS diagnosis aside and went to work in my perfume boutique.  Statistics show that the last 10 days before Christmas account for 50% of perfume sales for the year, so I couldn’t take a break.  Work, work, work and more perfume toxicity.  December 18 I visited the Gynecologist who noted problems in emptying the bladder, perhaps a worsening of the endometriosis.  I now understand the dreadful consequences of this female disease which impacts the hormonal balance and cramps up the bladder and body in general, thus impeding blood/cerebrospinal fluid circulation to trigger MS symptoms.

December 30, 1981 I took a ballet class. Barely a week after Christmas, exhausted as I must have been, I actually drove off to the studio in the Mission as though nothing had changed in my life.  I struggled through the barre and the variations only to stop after a few ridiculous grands jetés (leaps with both legs stretched out in the “splits”). People looked at me askance. After class, flushed but ever enthusiastic, I announced that I was suffering from a virus in my brain but would soon be on the mend. I exited the industrial building into the frigid night air. That would be my last class as a “dancer”.

When I read posts by the newly diagnosed, I am reminded of myself. Like Icarus, I had been flying high when struck down, feeling all powerful and without limit in my aspirations. Nothing was going to stop me, I would overcome this obstacle as I had overcome so many before.  Above all this malady wasn’t going to change me, I didn’t need to change.  Well, it did change me, it got the better of me.  So much for all that bravado.   Transformation was the name of the game.  But before I could become an actress in my own transformation, I did a last gasp effort at refusing responsibility. I handed myself over to the Chinese Doctor to be “cured”.
My MS diagnosis came well before the Internet, there was little advice available beyond the very conservative MS Society which I didn’t trust.

January was always a bad month for me and I now understand why, this irrespective of the Perfume business stress. Over the holidays I ate rich, sweet, fattening foods. All that Chocolate, Butter cookies, Champagne could only make me sick, whatever my particular ailments. So it was on January 15, 1982 when I visited the HMO Neurologist. He notes that I had been overdoing it physically and emotionally over the past month and that there had been little improvement in my overall status though there hadn’t been an overt“attack”.  He notes a mild exacerbation and that the left leg and arm were weak, the gait clumsy.  (This amazes me now because my left side entirely recovered several years later and it is now the Right side which is handicapped.) He wrote that he advised me to slow down and rest. Reading one’s medical file is a lesson in cognitive dissonance. What the Doctor says he said often has little relation to his actual behavior.  It’s as though he writes for a school exam, but when the professor isn’t looking he cuts loose with what he must really feel, like why does he have to put up with these sick people’s demands? Don’t they know there is nothing he can really do even if he wanted to?)

My Chiropractor had referred me to Dr. Cheong at my request for a Chinese Doctor of herbal medicine. I remember stopping by the Doctor’s storefront off Chinatown one cold foggy January evening with my friend Richard.  Somewhat rundown, the window display featured a plastic skeleton covered in black dots connected by lines running over the body, a fading poster with Roman Numerals referring to more dots connected to more lines, and some dried herbs spilling out of a basket. An old world  mystery beckoned from this display,  I  remember telling Richard I was confident I would find help there. 

I developed a cordial, even family like relationship with the Doctor and his Chinese-American wife Jenna. The Doctor told me he had begun training in Chinese Medicine at the age of 10 under the guidance of a Master in China.  Towards 1975 he migrated to California with his parents and set up practice. This was only a few years after Nixon’s 1972 “opening” to China and a few years before Deng Xiao Ping’s modernization revolution which has totally transformed the country. So Dr. Cheong belonged to an older, traditional China (even if officially the Chinese Government called themselves Communist.)  Dr. Cheong amused me with his  immigrant stories.  Friends told him that when one makes a dinner invitation, guests expect to have napkins  on their plates. So he carefully unwrapped the napkins he had purchased. And his friends laughed when they saw the table decked out with female sanitary napkins.

He was by far the best Acupuncture Doctor I have ever had.  My  appointments always began with me sitting  opposite him at his desk to discuss my condition (and, it was hoped, progress).  Then he had me lay my left wrist palm up on a small Chinese embroidered pillow to take the 6 pulses leading down from the thumb, 3 yang on the surface and the 3 profound  yin.   Then he did the same with my right wrist (for a total of 12 pulses relating to the 12 meridians.  I would study the theory later.) After that he examined my outstretched tongue, observed the color of my skin and then my eyes, all the while writing Chinese symbols in black on a large white paper pad.  I can’t remember how he described my condition using the five elements in Chinese medicine. (Wood, Fire, Earth, Metal, Water).  Water (Kidney/Bladder) was certainly a major factor but how it related to the others, I can’t remember.  He was the only Acupuncturist who did a proper diagnosis. At the first appointment he assured me he could treat my condition with Acupuncture and Herbs. So we set to work right then and there.

He had at least 4 cubicles with a bed in each where his patients lay exposed in their underwear, a blanket and a small electric heater keeping them warm. In this way he could treat 4 people in an hour, giving each one an hours treatment as he passed from one to the other. (That was the theory. He didn’t usually have 4 patients at a time. Sometimes my appointments lasted 2 hours, he really did his best to help me.)

We began with me on my back as he worked over the front of my body. I always held my breath in anticipation of pain at being pierced, but mostly his work didn’t hurt.  He was a bit rougher than some Acupuncture Doctors, but the anticipation was most always worse than the reality.  After placing the needles, he used tiny clips to attach wires leading to an electrical stimulation apparatus, and then he slowly increased the current until I couldn’t tolerate anymore. Sometimes, after the meridians had been stimulated, the points became more sensitive (which meant the meridian energy had opened up) and I would ask Jenna to turn down the current. He almost always treated the Gall Bladder 34 point outside the knee, saying this Meridian was always important in treating MS.  Points on the head and/or face, points down the middle of the chest, points in the abdomen, then on to the leg down to the feet, maybe 20 needles in all for the front of my body.

After at least a half hour of treatment Jenna would remove the wire clips and needles so that I could turn over and he then performed the same procedure on my back, always placing needles down the bands of muscles parallel to my spine I now recognize as the Bladder Meridian (Water).  Sometimes when I had cystitis he worked on the buttocks around the tail bone. That hurt. And the Kidney 1 point in the middle of the palm of the foot was a killer. I forbade him to use it again. 

He preferred Western clients because they paid his fee of $30 (which wasn’t high you’ll admit, although at first I think I went  four times a month which did stretch my finances.).  He complained about old Chinese ladies who paid with “lucky money” tucked in a small red, gold embossed envelope.  He couldn’t refuse these envelopes and usually would find only $1 when he opened them. “Lucky” for them, not so much for him.

After the treatment I dressed to go into the front room where Jenna filled the Herbal prescription Dr. Cheong had written out (in Chinese of course). A many drawered cabinet held the “herbs”, which included much more than seeds and dried leaves, including dried insects, snake skins, dried up body parts I couldn’t identify. These were the real thing. (Later in France the “herbs” would be ground down and mixed into a fine powder.) Jenna gave me several packets in a brown paper bag, telling me to boil down the contents of each packet, repeating the process with the same “herbs” the following day so that each packet lasted 2 days.  While the fragrance of the herbs was “pungent”, their taste was ghastly after having been boiled down into a thick, dark brown “tea”.  But I dutifully followed the directions to the letter, determined as I was to heal.

January 9, 1982  “Have been thinking about the loss of the use of my body. Can no longer dance, find even walking difficult. I will no longer know the pleasure, the pure delight of my own physical well being and prowess.  How did this happen? Tendency to be drawn into nebulous, ultimately destructive love ties ending in ruin…  am absolutely finished as a dancer. I haven’t quite believed it, or dealt with it. 
January 13, 1982 “ I am entering uncharted territory , I can’t return to my former self. Everything is new and fraught with danger, pitfalls  There are no longer any established certainties.  I must begin anew, forge a new personality.”.

My diary entries are pre-occupied with stressful interpersonal relationships, virtually nothing about healing.  What futility.   A brief mention late January of an appointment with the Chinese “herbalist” though nothing about what he did, about acupuncture.

February 21, 1982 “Very painful 10 days. Foreboding.”   So after a month of acupuncture treatments my abdominal pains were worse, not better.  I now think  the treatments were stimulating the bleeding.  I reluctantly asked the Chinese Doctor to stop working on the pelvic region and the meridians related to gynecological disorders. On March 31, 1982 the HMO Gynecologist noted I had had an episode of pelvic pain accompanied with a bladder infection 6 weeks previously, but though he considered the endometriosis to be residual, he put me on Danazol. Quote from Wikipeda “The agent is fat-soluble. It is an isoxazole of testosterone with isolated weak androgenic activity and no estrogenic or progestagenic effects.” It suppresses ovulation, thus preventing development of the endometrium which is sloughed off every month in menstrual bleeding.  It can cause ovarian cancer. (Great)[2]

No diary entries between Feb 26 and April 1, 1982.

I continued acupuncture treatments for the MS. On at least one occasion I came to my evening appointment with severe symptoms in my right foot so that I feared being unable to walk. Ninety minutes later when I left the Doctor’s office the symptoms had entirely disappeared. What does that have to do with an immune system “attack”, I asked myself. Now I can clearly see the blood must have been backing up to injure the brain or spine and the “energy” therapy revived the proper circulation.  The treatments did not always lead to such a dramatic improvement, but in general they kept me going.  When I next visited the neurologist on July 12, 1982 he noted “patient believes acupuncture helps her MS symptoms”.  He concluded that the MS was the same as at my last visit (in Jan?) and I was put on a 6 month return schedule.

April 1 I dreamed that a fellow dancer told me I wanted to be mothered. Yes, this was true.  And this raised the question of taking care of myself, of nurturing myself.
April 1 I feel trapped by my husband who had imposed the business on me which was wearing me down. He wore me down even further with his negative carping.  I was “spoiled” “lucky to be with him”, in a word, dependent and worthless, especially now that my dancer’s career was ended.  While I was aware of a difficulty in walking and occasionally the use of my hands, my handicaps weren’t visible, I didn’t then limp and my husband could entirely ignore my health problem, which he did  - other than be annoyed at my “lazy” inexplicable fatigue. I continued to have “mother” dreams.  My sister “always felt acutely this lack of being mothered. It must count for something. I always felt an orphan, that I was on my own, that I raised myself…No mother.”   I was still going downhill. Running the perfume boutique exhausted me leaving me no time for writing or any other creative project. I desperately missed life in the theater which was obviously a thing of the past.  I needed a creative outlet and was being buried alive in a business my husband had wanted me to open. And I was SO tired.  My husband wanted no part of any MS disease, he ignored it.

On July 26 the gynecologist notes I was being treated for endometriosis, he had prescribed in April a 6 month course of Danazol , and that I would be going to Paris in October.

My husband and I did travel to France for 5 weeks October-November 1982.  I was amazed that, in spite of the exhausting long flight and jet lag I was reasonably strong, in some ways I felt better. The reason is obvious, I had escaped the “toxic” perfume fumes (not to mention the shop itself.)

I had had to admit the Danazol calmed the endometriosis with all its complications – terrible cramps, pelvic pain, cystitis and MS flare-ups which a year later I would analyze in great detail.  But during my French trip I noticed that  the veins in my arms and legs had swelled up so that I feared some kind of stroke complication. I attributed this to the Danazol and stopped taking it and, indeed, the symptoms disappeared. I recalled that I had stopped taking birth control pills in 1969 for fear my head would “explode”, and that I also had suffered from migraines.  All of this impressed upon me the connection between hormonal therapy and the vascular system and the potential for a stroke like incident, even though the Danazol was designed to suppress female hormones.

Return to reality, I hit bottom after the 1982 Christmas rush.  I was a ruin, could hardly move for at least a week and dragged around for months thereafter.  I was forced to admit that the CHINESE DOCTOR HAD NOT CURED ME. While the the Acupuncture seemed to diminish the MS symptoms thus slowing the creeping paralysis, I continued to weaken.  I didn’t think the herbal teas were helping me, they began to make me nauseous and I asked to stop taking them.  The Doctor wasn’t  pleased, he said I needed them. I stopped the herbs before the end of 1982. 

My  brief history for April 1980 through Dec 30, 1982 reads:
April/May 1980: Multiple Sclerosis develops. By September had recovered sufficiently to resume dancing.
September 1981: Open perfume boutique. Toxicity. (Big health mistake)
Spring 1981: First real onset of insomnia.  (Right here we have an indication of metabolic dysfunction.)
Sept/Oct 1981: Health begins precipitous decline:

1. Endometriosis pain increased in intensity and new areas were affected, specifically the lower abdomen and bladder. Pain accompanied by increased bloating of abdomen.
   
2. At the same time Multiple Sclerosis (MS) flared up, gradually beginning to affect the legs.Not fully aware of what was happening until December. Last Ballet Class Dec 30, 1981.
   

1982; TERRIBLE YEAR. Encometriosis attacks so painful, generally debilitating, invaliding, that I could barely recover from one before the next one began.  These “attacks” impacted adversely on the MS, not only by weakening the nerves in particular, but by undermining my general health such that I was continually subject to infections (sore throats, colds, bladder infections). Even as MS symptoms improved, endometriosis “attacks” would set me back again. Under care of Dr. of Traditional Chinese Medicine (Herbs/Acupuncture).  Treatment seemed to improve general vitality and MS affected nerves.  However, the endometriosis/hormonal problem proved intractable.
April 1982-October 1982:  Took Danazol. Improved Endometriosis in general and the MS simultaneously.
December 30, 1982:  Endometriosis “attack” severe, renewed swelling of ovaries which led to an MS attack in January 1983.

Men might find this discussion of no interest because endometriosis is a female disease.  But I now understand that these endometriosis “attacks” exacerbated the MS because they stressed and cramped the body so that the central nervous system  fluid circulation must have been severely restricted. These attacks undermined my health in general which could only further reduce blood/brain perfusion not to mention cerebrospinal fluid circulation from the back. The back musculature was so seized up and rigid that it seemed to pull the vertebrae out of alignment.  The cramping also hindered flows through the urinary tract leading to infection.  In 1981 the MS began to flare up along with the endometriosis. I can now understand why.  Contrary to received wisdom, I now believe that the primary problem doesn’t lie in the immune system so much as in the fluid circulation bathing the Central Nervous System.  This might strike some as simplistic, but I consider MS to be largely a question of fluid mechanics which ARE quite basic.  

For men as well, whatever ails them to cause the body to seize up or restricts blood/CSF circulation may trigger MS “attacks”.  I now understand that the Acupuncture opened the blood/cerebrospinal fluid circulation. It relieved body tension and energy flows in general. There are those who say “I tried Acupuncture and it didn’t work for me.  So there.”  Acupuncture was developed in China over thousands of years of observation and practice. Some Doctors practice a  bastardized form of Acupuncture by integrating it into the allopathic model. One begins with an allopathic diagnosis and then uses formulas to treat it.  I’ve found that formula Acupuncture doesn’t work, that those who follow the Chinese model are likely to be most effective.

So I hit bottom January 1983. “MS rapid one week decline, loss of nerve function hitherto unaffected. Feeling in bladder reduced, insufficiently emptied on urination , infection results. Severe insomnia further weakens vitality.”

By January 1983, after a year of treatment by Dr. Cheong, I realized  “Father” couldn’t fix me. That realization was the FIRST BIG STEP towards healing.  Many people make the mistake of handing themselves over to an authority to be “fixed”. No, I needed to “fix” myself, take care of myself. Of course  expert therapists will be called upon. But I needed to assume responsibility for myself, to change what needed changing, to become involved.  In this sense Multiple Sclerosis is a health inducing disease because there is no competent authority to effectively treat it, it is considered “incurable”. Once the patient realizes this, she can set out on the path of healing.

And the healing is HOLISTIC.  For me, the Multiple Sclerosis “cure”, cured everything else.

And guess who launched me?  My mother.  I traveled north to Seattle in January 1983 to visit her.  She had collected articles – some provided by her mother and some by her friends – about healing MS. I didn’t pay much attention to them during my visit, I didn’t even want to admit I needed help (in fact I felt humiliated that I had a “disease”). I tucked the information away in my suitcase for future reading.  But ultimately it would prove invaluable. 

And now I will conclude with a tale which I find amusing. Since I had issues with female jealousy, this incident was a warning about what to expect should I move to France.  Even though I spoke French (not too well at the time), I didn’t speak FRANCE in the social sense. At the time I was an American young woman with an American way of seeing things.  My French born husband Jean had come to the USA for his University studies the year I was born.  We lived in San Francisco and generally vacationed in France.  The following comes from my journal, the names have been changed.

October 1982 – Dinner with the Godon family at Tours in the Loire Valley.

My husband Jean and I  were invited to dine with Jean-Pierre Godon and family at their home in Tours.  I wasn’t warned in advance, I had planned to stay home and nurse my cold while Jean took Francois (our host) out to dinner when all of a sudden at 19:30 Jean tells me we are invited to dine with Francois’ brother in Tours. It made me cross to be told so late. Had I known I wouldn’t have taken a long walk during the afternoon which tired me and I knew it was unwise for me to go out on a rainy cool evening for an inevitably long social engagement. (I should have remained home in bed.)   Doubtless we were being honoured by this invitation, but it was an honour I could have well have done without. Let’s see why.
We arrived at a nice old townhouse, three stories high, nicely appointed circa 1900. Jean thought it resembled a San Francisco Victorian.
We were subjected to a display of smug self satisfaction – a narcissistic self entitlement of enormous proportions, a river of sickening sweet syrupy self satisfaction.
That afternoon Jean had found Mme Godon charming, so I wasn’t prepared for the family’s behavior. (Insert: Except now, upon reflection, I think I understand what happened.  Jean had charmed Mme Godon which is why she invited us at such short notice..  And then he arrived with a lovely young wife 20 years his junior.  Poor Mme Godon, this she hadn’t expected. So she engaged the entire family in her revenge. (My husband was very naïve about female psychology.) Mme Godon, while superficially friendly, was actually quite cold with an evident wish to be disdainful. Fattish, large double chin, flat face with a triangular piece of nose pasted on, brown squirrel eyes, straight eyebrows, nondescript invisible lips. Of course, mine is not a flattering description but I found her very offensive.
We met all but one of their five children (4 girls and 1 boy).Marianne, who had spent a year in Charlotte North Carolina, was too embarrassed to speak English. Her sister took a distantly superior attitude. After the sister’s boyfriend came to pick her up, Mme Godon informed us that the boyfriend was the “brain” of Tours, having attended the Ecole Normale Superieur enroute to studies in Electrical Engineering at Grenoble, his sister being even more brilliant. Their mother was a “polyglot” being half Italian and half Polish, she spoke Russian, French and English as well.  Thus we were informed of the Godon’s superior social status and relations and were everywhere and in everyway reminded of same. Furniture, books, their conversation in general boring but ever reinforcing the question of status.
At table Jerome (about 14 years) and Fabienne (about 12) were reminded of their manners (“Oui Monsieur”) with that ever present attitude of self satisfaction des enfants bien elevés (well raised children) (That morning Francois had told us that a young man is carefully watched as he eats “le coq”, a soft boiled egg in the shell, to ascertain if he has been well raised or not.)
One could surmise that one’s table manners were minutely scrutinized. Somehow basic civility was of no consequence, that is to say, my Grandmother’s hospitality at making one’s guest feel at ease, comfortable, showing a regard for the other. and the world. The Godon’s display of superiority reduced the guest to a spectator in their self glorification. Mr Godon did ask where I was raised and looked slightly pained at my response as though my French was so utterly bad it was painful to hear. (No wonder their daughter didn’t dare speak English even though she had spent a full year in the States.) Mme Godon obviously liked to talk – the two of them in fact enjoyed their own conversation (such as it was) and weren’t much interested in anything outside themselves. On solar energy, events in the US and the world, their interest was perfunctory. Mme Godon kept staring at me with blank brown eyes.
As the only female guest I was the first to be served. For dessert Mme Godon placed the silver spatula under the lemon tart and gave me the distinct impression she meant me to take it (though I preferred not to). I reflected on what I should do and then decided to take it. Thereafter she made a big display of giving the others their choice, reserving the children for last since, being well raised, they would say they had no preference. 
We returned to the salon for coffee.  At one point Mr and Mme Godon competed with one another as the most aggressive conversationalist.  The subject turned to the “Moonies” and religionaries in general. (Earlier in the evening I had mentioned that President Reagan had extolled  the Rubik cube as an example of the American free enterprise spirit, remarking derisively that in fact it had been invented by a Hungarian. Mr Godon wasn’t interested. – or maybe he admired Ronald Reagan.)
Every time I tried to speak, I was interrupted. Finally I expressed my impatience and disapproval when Francois interrupted me (though he wasn’t by far the worst, I reacted after a long string of interruptions.) Jean asked me what I wanted to say. I shook my head, but he insisted. I spoke of the lack of a left wing party in America, that there was no outlet for social grievances which resulted in a sense of hopelessness.   I contrasted this with the Peoples Temple and the Moonies who sought money and power by attracting the middle class, citing as an example a girl who used a “Moonie” attorney to sue her own family. I couldn’t find the word for demands or grievances (“revendications”) which Mme Godon finally supplied to  her husband who again looked pained at my French. (I was by then very tired and had a runny nose.) (Contrary to the Anglo-Saxon custom of allowing each to speak in turn, the French interrupt each other constantly. I would later learn that what I considered rudeness wasn’t unique to this family.)
Somehow all this, my displeasure at their basic lack of civility, sank in, especially to Mr Godon. I kept my pride intact and looked with displeasure at THEM and could hardly wait to leave. Francois allowed us to escape. As we left Jean invited them to San Francisco, and I said “et vos enfants” (and your children) at which Mr Godon looked worried, somehow unsettled.
I had yet to endure the smug look on Jerome’s face. The children were ever ready for a subject of mockery and found it in my rubber rain boots, “so practical like all Americans” remarked Mme Godon.   I would hate to be subject to their mockery. Of course their mother had given them permission for this display of ill bred behavior. It really shocked me as I had done nothing to deserve it other than exist. (And in general I had always been well received by Jean’s friends, family and acquaintances.)
For me this family is almost a caricature of the French provincial bourgeoisie at its worst. Unfortunately this was to become my misfortune over 10 years later. 

Tags: Multiple Sclerosis, MS, Acupuncture, Endometriosis, MS treatment, holistic healing, Chinese herbs, MS Cure, HSCT Stem Cell treatment, Dr Flanagan,