CCSVI UPDATED 2016 -

[vesta]

Greetings. I intend to post the following paper on Daily Kos on March 2, 2016 at 5:30 p.m. CET (Paris time) which is 8:30 a.m. PST, (11:30 am EST) I believe to consult the post one must register and then look up Diaries (I doubt my post will pop up on the front page.)
Title: Multiple Sclerosis: CCSVI Updated 2016
Author: Verokos
Posted: 5:30 p.m. CET
The time may be slightly off if I've mishandled the post, or my computer breaks down, but generally I think it should go off as scheduled.

Since my previous posts on Daily Kos have given rise to a series of vicious troll comments I’m hoping, those interested in CCSVI will comment intelligently on my post so as to be informative. I welcome criticism where warranted, I may be misinformed and will stand corrected. But I want to get the word out and Daily Kos has a large public. (In fact it was through that site that I first learned about “Liberation Therapy” in 2010.)
So if interested please mark your Calendars for March 2, 2016. (One must register on the site to be able to comment.)
Thanks, Vesta

CCSVI MS UPDATED 2016
It has been just seven years since the Professor Zamboni posted his CCSVI theory on the internet 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 launched my “MS Cure Enigmas” site as follows.
“In Multiple Sclerosis blood vessels "deformed" by childhood stress cannot accommodate the blood flow. I believe the auto-immune activity is secondary to the true cause of MS, 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 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.”
Return to the present. Frankly, that analysis is O.K. but it’s slightly off the mark, ignoring vital factors. What’s missing? 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. (refer to recent work) 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 the vital factor.

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). It is NOT the nerves which impact the blood flow so much as the blood flow which impacts the nerves. 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.
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. I believe every effort must be made to stop the blood reflux, stop the relapses 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?
That being said, the most grievous omission in my paper is Primary Progressive MS, indeed Progression in general. I’ve come to think that the 10% PPMS cases exhibit primarily obstructed cerebrospinal fluid (CSF) or direct pressure on the spinal cord itself, (NOT stenosed veins) 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”). Once that happens, venoplasty effectiveness may be limited.
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.”
And an additional interesting detail. While RRMS strikes women 2 to 3 times more than men (think veins), PPMS is thought to strike principally men (think accidents, child sports injuries).
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).
And now we arrive at a real irony. Dr. Damadian invented the precursor to this famous MRI so necessary to the MS medical industrial complex. He recently invented the FONAR cine (fluid circulation – cerebrospinal, venous, arterial) Upright MRI which has revealed that many MS patients exhibit obstruction of cerebrospinal fluid in the neck (cervicals). In other words it’s a body structure issue for these patients, not an auto-immune disorder. Treatment calls for skeletal adjustments, an Osteopath or a Chiropractor, perhaps even surgery.
All of this gets complicated so let’s summarize. There are two fundamental schools of thought about MS etiology (causation) and treatment. One is biochemical, the other functional (fluid circulation).

Biochemical includes the auto-immune theory, bacterial infection, viral infection (Epstein Barr especially), vitamin deficiency (eg Vit D3 or Vit B12), nutritional deficiencies, toxicity exposure.
There are two basic forms of FUNCTIONAL Multiple Sclerosis. 1) CCSVI MS concerns defective veins. 2) Structural MS concerns elements of the body structure - bones, muscles, arteries. In both cases the blood and cerebrospinal fluid circulation are obstructed or slowed. Effective treatments differ, in the one case the veins need to be addressed, in the second the body structure.
Biochemical focuses on the inflammatory “auto-immune” phenomena. Where does the inflammation come from, spontaneous generation? I would say it is a response to poor blood perfusion which injures the tissue, that is the functional issue.
I haven’t up to now considered stem cell research which hopes to stop MS “attacks” as well as reconstitute the damaged myelin sheath. In one method the immune system is destroyed to be “re-booted” with new stem cells. At least one positive report dates back 3 years. (In general reports of the initial recovery don’t extend beyond 2 years.) IF rebooting the immune system stops the MS, this implies that it is indeed an immune system disease, that a revised immune system will be the cure. Does this mean that the EBV virus periodically re-activates and by eliminating it one eliminates the MS??? What about the dysfunctional vascular system? IF the injury which triggers the immune response is in fact a blood reflux, doesn’t one need to enhance fluid flow to prevent subsequent injury? An ongoing blood reflux would only continue to damage the reconstituted myelin.
Now, here in France when I present this theory to an M.D., his/her eyes glaze over, I’m dismissed out of hand, they have never heard of this theory and it contradicts what they studied in medical school which is that M.S. is an auto-immune disease, period. English based research increasingly casts doubt on this theory, in fact the Science and Practice of MS appear to have parted ways. Only this past summer it was discovered that the brain is drained by lymphatic vessels. Already Science had proposed that the brain’s immune system activity exists to HEAL injury to the brain, not injure it. The origin of the injury? Most likely refluxed blood and/or cerebrospinal fluid pressure, not some mysterious spontaneous generation.
Scientific studies confirm these observations. For example 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. There it is, what we needed to know. The Answer.
This suggests that disease modifying drugs intended to suppress the immune system are harmful. Indeed, the white matter lesions observed on the MRI may be as much a sign of healing as of pathology. And the observed lesions don’t correspond to handicap. Atrophy of Grey Matter does. So the entire protocol of diagnosis/drug treatment based on suppressing white matter lesions is limited if not just plain wrong. At the very least it should be rethought. (Side note. Canadian MSer Chris Sullivan proposes that one can measure the brain’s grey matter atrophy by comparing successive MRI images, using a ruler.) White matter lesions don’t correspond to handicap whereas grey matter atrophy does. Drugs intended to suppress white matter lesions do nothing to prevent grey matter atrophy and may be harmful – some leave their victim open to a deadly brain virus. MSers can often themselves limit or prevent grey matter atrophy, thus handicap, by stopping the blood reflex, nourishing the brain with healthy foods and supplements, and oxygen enhancing exercise.
END OF PART ONE
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 stenoses in the veins were observed he recommended opening the stenoses with balloon angioplasty as well as the chest azygos vein if indicated. 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…”
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 angioplasty itself, the sonogram being inconclusive. The FDA put a stop to CCSVI treatment for MS outside of research trials in May 2012 which has retarded development of appropriate stents and improvements of the procedure.
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 valve problem (for example) IN the vein. In this case angioplasty is inappropriate and even potentially damaging.
So before even considering angioplasty I believe one should be examined for skeletal obstructions. The ideal equipment is the FONAR upright Cine MRI invented by Dr. Damadian.
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) recommends 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).
I don’t like taking antibiotics because they trigger MS symptoms. Why? I always assumed that they perturb the immune system. Now I think they simply act like a toxin which creates body tension. After a bad experience with an inclined bed (see post “ Inclined Bed Warning” Jan. 5, 2015) I’ve concluded that the origin of my current left foot symptom is pressure on the spine and/or cerebro-spinal fluid. So the slightest tension impedes fluid circulation. (Homeopathy works by relieving that tension.) Foods can act as toxins, glutens being a classic example. 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. I don’t think one need look any further than that basic principle. And work from there.
I ask my husband every day for a 30 second massage of my upper back, both of us standing, and then a massage down the length of my back to the lumbars. He grumbles but can see that I’m doing better so he does it. And every morning I give myself a TENS acupressure treatment. (See TENS Acupressure post). I take a walk (with a cane) every day. I swim if I can or use a portable bike apparatus. And I get an osteopathic or acupuncture treatment once a month. (I’ve resumed Homeopathic treatment. The Osteopath was pleasantly shocked by the suppleness of my body following a course of homeopathy.)
Osteopaths are the ideal therapists to get the fluids circulating. I’ve come to think Progression is caused by blocked cerebrospinal fluid in the spine, that mobility deficiencies originate in the spine. 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.
In the meantime, anyone who seriously seeks to heal MS can’t ignore nutrition. Let’s start by looking at the MS healing recipe cooked up by Ashton Embry, PhD for his son Matt who describes it on his site http://www.mshope.com.
I recommend Matt’s site as a starting point.
After studying patient testimony worldwide, Matt went to Poland in 2010 where a Sonogram revealed that his jugulars were “blocked” 100% on one side, 50% on the other. He underwent angioplasty and enjoyed the restored blood flow for about 3 months after which the veins apparently restenosed. He didn’t want to take the risk of having stents inserted. (It was mainly his brain congestion rather than mobility issues which the angioplasty corrected.) He now keeps the blood flowing through intense cardiovascular exercise. In other words, the veins must narrow or collapse or the valves “stick”, but exercise will open them, they are not actually obstructed. I use swimming and a portable “bicycle” device as well as osteopathy or massage or acupuncture to get the same results.
I walk with a cane and am certainly not in the shape he is. That’s why I mention healing options such as osteopathy. I believe everyone can get some relief no matter what their condition. Even a simple non-professional massage should help. Think of moving the blood from the heart, up through the brain and back down to the heart, think of speeding up the flow. Think positive action, relief of stagnation. I really do feel better since I began to work on my “fluid mechanics”. My head is no longer congested.
Back to diet.
I believe 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).
I describe my diet under the Paleo-Macrobiotic title. CCSVI Alliance website provides a diet as does MS Diet for Women.
RESOURCES
CCSVI Alliance and ThisisMs.com are the websites to consult for updated information on CCSVI.
CCSVI Alliance http://www.ccsvi.org/
The site is well worth visiting and rather than repeat what they say, I insist on a visit if one is serious about understanding fully the CCSVI issue. Under The Basics find a Basic Definition of CCSVI, a Technical Definition as well as “The Origin and History of CCSVI”. Under Advanced Topics find RESEARCH DATABASE – you want SCIENCE – here it is . Treatment and Efficacy, Treatment Risks, Addressing the Myths, Research Analysis and “The Great Debate: CCSVI and MS”. Under Discussing CCSVI with your Doctor find tips on creating a medical team (Primary Care Physician, Neurologist, Interventional Radiologist – see http://www.sirweb.org) The Alliance gives advice on finding an Interventional Radiologist without naming anyone, obviously because the Big Pharma/Neurologist lobby has basically hindered those who treat CCSVI, forcing them “underground”.
There is also excellent advice on self care, including Joan Beal’s “Endothelial Health”.
CCSVI Alliance doesn’t neglect the “functional” form of CCSVI which requires skeletal adjustment rather than Angioplasty. Their home page features Chiropractor Dr. Scott Rosa’s paper and video “How Craniocervical Misalignment Effects Fluid Flow”. Dr. Rosa works with MRI inventor Dr Raymond Damadian’s FONAR Corporation whose UPRIGHT multipositional MRI can register the cine (moving) cerebrospinal fluid flow as well as arterial/venous flow dynamics. He mentions how the glymphatic system cleanses brain toxins and the recently discovered existence of the brain’s lymphatic vessels. Dr. Rosa founded the Trauma Imaging Foundation (TIF) in 2012 and developed the Atlas Orthogonal Instrumental Manipulation Technique.
For diagnosis of CSF and arterial/venous flow there are apparently 15 FONAR sites in the USA. (http://www.fonar.com/news/052114.html
Europeans interested in obtaining an Upright MRI refer to Medserena Upright MRI Centre in London.
http://www.mri-london.com
Once assured that the observed vein stenosis is not caused by pressure ON the vein rather than pathology WITHIN the vein, one can proceed with Angioplasty.
Brain Flow Team, Rome - <www.ccsvi.net>

For Europeans this may be the best resource for Angioplasty (PTA) treatment of CCSVI. The Italians have taken the lead in diagnosing and treating CCSVI since one of their own – Dr. Zamboni – launched the idea publicly on the Internet December 2008. They have performed more than 2500 PTA in CCSVI patients since 2010. See 2013 Journal Vascular Surgery (http://www.ncbi.nlm.nih.gov/pubmed/23948669 ).

In Brooklyn, New York I believe the Interventional Radiologist Dr . Sclafani continues to treat CCSVI. The index of his excellent case studies can be found at chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic23360.html#p217664 from the ThisisMs.com website.
<www.thisisms.com/>
Thisisms.com under CCSVI
1. “Dr. Sclafani Answers some Questions” for Angioplasty
2. “upright doc”under “CCSVI and CCVBP”for skeletal issues (Dr. Michael Flanagan)
3. “cheerleader” (Joan Beal) 2015 ISNVD** abstracts online
All available in Veins and Lymphatics publication--
http://www.pagepressjournals.org/index. ... /view/5398 **International Society of Neurovascular Diseases
See also Dr. Flanagan’s review article published in Neurology Research International
http://www.hindawi.com/journals/nri/2015/794829/
Other resources :
International Society for Neurovascular Disease (ISNVD) founded 2010.
Spanish Language site posted by a fellow MSer http://www.secretosdelaesclerosismultip ... pot.com.es.
MSHope
Joan Beal’s “The Vascular Connection”
Marie A. Rhodes’ book CCSVI as the Cause of Multiple Sclerosis is an outstanding general resource.
I am suggesting these sites for information only - a starting point in your own research.
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.

*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/fetchObj ... tation=PDF

Previously published on MSCureenigmas.net and ThisisMS.com

[1eye]

This paper from plosone merely provides a more detailed verification of what Dr. Zamboni has found in his plethysmography studies. For MS patients, it is vitally important to allow these 5 seconds to pass before doing anything, after a change in posture. This includes standing up after sitting or lying down, sitting up after lying down, basically any change that will require the circulation to catch up, and the brain to restore its blood flow.

If this 5 to 10 second interval is not allowed to pass before doing things like starting off walking, a fall is very likely to happen. This has happened to me many times, but not since I have started allowing myself the 5-10 seconds recovery time. It is part and parcel with my illness. It is the price I have to pay for my safety. Before my CCSVI intervention, I was a mass of bruises. My falls were much less frequent after it. But I still fell. Now I do not, because I know about this physical limitation. The knowledge keeps me safe. I do not know why the MS Society and other health people do not broadcast this from the rooftops.

[vesta]

This paper from plosone merely provides a more detailed verification of what Dr. Zamboni has found in his plethysmography studies. For MS patients, it is vitally important to allow these 5 seconds to pass before doing anything, after a change in posture. This includes standing up after sitting or lying down, sitting up after lying down, basically any change that will require the circulation to catch up, and the brain to restore its blood flow.

If this 5 to 10 second interval is not allowed to pass before doing things like starting off walking, a fall is very likely to happen. This has happened to me many times, but not since I have started allowing myself the 5-10 seconds recovery time. It is part and parcel with my illness. It is the price I have to pay for my safety. Before my CCSVI intervention, I was a mass of bruises. My falls were much less frequent after it. But I still fell. Now I do not, because I know about this physical limitation. The knowledge keeps me safe. I do not know why the MS Society and other health people do not broadcast this from the rooftops.

Thanks for the comment. A year ago I sat up abrupty in bed and gasped for breathe for several seconds. I considered this a heart "event" and was examined by a cardiologist who found a problem with the aorta. However, I went no further than that since I knew the problem was a delay in blood circulation since I had risen so precipitously. I now am careful to allow time for the blood to circulate from the head down into the heart. Regards

[maidmarian]

Hi,
Thanks for your interesting thoughts. I am having the TVAM procedure on Tuesday next week. Looking forward to it! I am 39 year old female - I've had MS eight years. I take Gilenya but had a horrible time on Rebif and my disease progressed. I feel pretty good. I follow a gf / df diet. I exercise daily and have no symptoms except fatigue. MS has always been a vascular problem for me.

What led to my diagnoses were my black outs. I would tilt my head back and instantly I would pass out. I went to Neuro for this. An MRI showed a clear brain - no lesions. They thought maybe stress was causing it. Like clockwork when the blackouts went away - after what felt like a TIA - I had numbness, tingling, etc - clinical MS symptoms. A new MRI (2 weeks later) showed 8 lesions. A diagnoses at MAYO in Rochester with all the tests. Doctors quickly looked past my "Blackouts" - they said they were anxiety, dehydration, ANYTHING but something that was and has been directly contributing to my ms.

I look forward to the genius who will put this puzzle together.

I failed a tilt table (my heart went down to 13 with the syncope) and begged my neuro for an MRA. The radiologist report read exactly how I thought it would. Both jugular veins "severely stenosed". My doctor was shocked. He referred me to a vascular doctor who was a total jerk.

I found Dr Arata in Newport (a short drive from me in LA). I love his thinking and connection with diet, your gut, etc.

I have felt a lot of pain over the last 8 years - bad attacks, dysautonomia (brought on by levothyroxin), enormous fatigue - if I have any advise to anyone in pain right now please keep moving. Circulation is key to this disease no matter what your neuro says. Hang in there it gets better!

[lyndacarol]

I am having the TVAM procedure on Tuesday next week. Looking forward to it! I am 39 year old female - I've had MS eight years. I take Gilenya but had a horrible time on Rebif and my disease progressed. I feel pretty good. I follow a gf / df diet. I exercise daily and have no symptoms except fatigue. MS has always been a vascular problem for me.

What led to my diagnoses were my black outs. I would tilt my head back and instantly I would pass out. I went to Neuro for this. An MRI showed a clear brain - no lesions. They thought maybe stress was causing it. Like clockwork when the blackouts went away - after what felt like a TIA - I had numbness, tingling, etc - clinical MS symptoms. A new MRI (2 weeks later) showed 8 lesions. A diagnoses at MAYO in Rochester with all the tests. Doctors quickly looked past my "Blackouts" - they said they were anxiety, dehydration, ANYTHING but something that was and has been directly contributing to my ms.

I look forward to the genius who will put this puzzle together.

I failed a tilt table (my heart went down to 13 with the syncope) and begged my neuro for an MRA. The radiologist report read exactly how I thought it would. Both jugular veins "severely stenosed". My doctor was shocked. He referred me to a vascular doctor who was a total jerk.

I found Dr Arata in Newport (a short drive from me in LA). I love his thinking and connection with diet, your gut, etc.

I have felt a lot of pain over the last 8 years - bad attacks, dysautonomia (brought on by levothyroxin), enormous fatigue - if I have any advise to anyone in pain right now please keep moving. Circulation is key to this disease no matter what your neuro says. Hang in there it gets better!

Welcome to ThisIsMS, maidmarian.

I'm curious… In "all the tests" at the Mayo Clinic in Rochester, MN, did you have a vitamin D test?

When I was there for 2 weeks of testing in '92 (trying to find the reason for my symptoms), I never had a vitamin D test – never had any nutrient testing at all, for that matter. In January 2016, I had a vitamin D test; the results were low – frankly deficient (24 ng/mL). Just wondering how your vitamin D level might compare to mine.

[1eye]

As I said, it is critically important for MS patients to avoid walking immediately after a posture change (like standing up from sitting). Dr. Zamboni used 2 instruments simultaneously to find this out: a tilt table and a plethysmograph - a blood pressure device around the patient's neck. He did a controlled experiment comparing pwMS to healthy (non-MS) people. There was a critical difference between normals and MS patients. MS patients take 10-20 seconds to stabilize after a posture change to upright. The blood drains from the heads of MS people more slowly than from the heads of healthy controls. So in that time, after the patient is upright, they will be momentarily dizzy and may fall, if trying to walk immediately.

Since I started allowing 10-20 seconds after I stand up, before walking, my sudden falls have stopped. Before this, it was only a matter of time before I critically injured myself. My falls have been serious, with broken bones, concussions, and bleeding. I have had surgical reconstruction of my twice-broken collar bone. If this information that Dr. Zamboni found out, can be regularly told to MS patients, many falls, injuries, and potentially deaths can be avoided.

This information is not getting to MS patients now, because medical people, especially here in Canada, have turned blind, deaf, and dumb whenever Dr. Zamboni is involved. Dr. Mark Freedman has, and is still, to this day, attempting to drag Dr. Zamboni's name through the mud. A television broadcast tonight, ostensibly about Dr. Freedman's write-up in the Lancet, was careful to mention the so-called "Liberation" procedure, and all the controversy Dr. Freedman was instrumental in publicizing, through radio, television, and newspapers. It seems he cannot resist, even when the Lancet story is about him. This is not a competition. MS patients have real lives, and real misfortunes, with no media involvement. We need to stop using them as political and publicity cannon fodder, and to stop attacking Dr. Zamboni.

[vesta]

Thanks all for your input. Patients need to ignore the MD blockheads who can't accept that what they learned about MS in medical school is outdated. Jealousy as well as group think may be factors in the "let's trash Zamboni" crowd. I like Timothy Leary's definition of the Semmelweis Reflex (quote from Wikipédia) The Semmelweis Reflex is now used as "a metaphor for the reflex like tendency to reject new evidence or new knowledge because it contradicts established norms, beliefs, or paradigms."
Dr. Timothy Leary in The Game of Life more pithily defined this reflex as "Mob behavior found among primates and larval hominids on undeveloped planets, in which a discovery of important scientific fact is punished."
Good luck maidmarion on your coming procedure 'and keep us posted!)

Best regards, Vesta

PS: Is this the Dr Freedman doing Stem Cell research? Dr Zamboni's work implies the primary problem is vascular, not the immune system which would mean rebooting the immune system won't solve the vascular problem.

[1eye]

I think one positive empirical result is worth more than all of our Internet punditry. The duality between MS and cancer is to me a scary thing. If there is danger of cancer in non-homogenous stem cells due to some kind of host-graft complication, perhaps homogenous transplants are the only way to avoid it. We should all make sure our own offspring are registered in cord blood and embryonic tissue banks.

The immune system is an organ of the body containing human, mitochondrial and 1000 or so non-human species of DNA. MS is not a mystery either Dr. Freedman or Dr. Zamboni have yet scratched the surface of. 8 patients in one experiment, and a few dozen in another. I am happy for those who have had success, either way, but people like me may have better luck with exercise and biotin, especially when dollars become scarce. I still have hope, but I think I am realistic in not counting on getting much better. Staying well away from unproven and ineffective drugs.

There are dangers in both oversimplification and overthinking. To be honest I think the press is largely to blame for the internecine war that has gone on against MS doctors and MS researchers, who have more common ground than not.

[ThisIsMA]

Hi Maidmarian,

How did your procedure go with Dr. Arata? Do you have anything to report?

I'd love to hear what it was like, was it easy or difficult, how is the recovery going, and whether you've had any symptom improvements.

I hope your procedure was a big success!

M.A.

PS Your story about blacking out when you look up being your first symptom, reminded me of an old post from someone who said she used to have a symptom where she was unsteady on her feet (I think that was it?), but if she would look up, suddenly she could keep her balance just fine. Or it was something like that, a symptom improvement when she looked up. I remember her saying that she would demonstrate it to her doctor and he had no answers for her as to why it made a difference. She also said it doesn't work as well now as it used to, once her MS had progressed some more. It surely seems like a clue that there's something about the neck area related to MS!