I have been following the Vascular Involvement theory in MS for some time and have noticed there are many links to other diseases and recently there is allot of comment on spine alignment with the skull. This article is one of many the has caught my attention.
Eighty-One Patients with Multiple Sclerosis and Parkinson’s Disease Undergoing Upper Cervical Chiropractic Care to Correct Vertebral Subluxation: A Retrospective Analysis
Erin L. Elster, D.C. Bio
[August 2, 2004, pp 1-9]
Objective: The objective of this article is threefold: to examine the role of head and neck trauma as a contributing factor to the onset of Multiple Sclerosis (MS) and Parkinson’s disease (PD); to explore the diagnosis and treatment of trauma-induced injury to the upper cervical spine through the use of protocol developed by the International Upper Cervical Chiropractic Association (IUCCA); and to investigate the potential for improving and arresting MS and PD through the correction of traumainduced upper cervical injury. Data from 81 MS and PD patients who recalled prior trauma, presented with upper cervical injuries, and received care according to the above protocol are
Clinical Features: Each patient was examined and cared for in the author’s private practice in an uncontrolled, non-randomized environment over a five-year period. Of the 81 MS and PD patients, 78 recalled that they had experienced at least one head or neck trauma prior to the onset of the disease. In order of frequency, patients reported that they were involved in auto accidents (39 patients); sporting accidents, such as skiing, horseback riding, cycling, and football (29 patients); or falls on icy sidewalks or down stairs (16 patients). The duration between the traumatic event and disease onset varied from two months to 30 years.
Intervention and Outcome: Two diagnostic tests, paraspinal digital infrared imaging and laser-aligned radiography, were performed according to IUCCA protocol. These tests objectively identify trauma-induced upper cervical subluxations (misalignment of the upper cervical spine from the neural canal) and resulting neuropathophysiology. Upper cervical subluxations were found in all 81 cases. After administering treatment to correct their upper cervical injuries, 40 of 44 (91%) MS cases and 34 of 37 (92%) PD cases showed symptomatic improvement and no further disease progression during the care period.
Conclusion: A causal link between trauma-induced upper cervical injury and disease onset for both MS and PD appears to exist. Correcting the injury to the upper cervical spine through the use of IUCCA protocol may arrest and reverse the progression of both MS and PD. Further study in a controlled, experimental environment with a larger sample size is recommended.
There have recently been links between MS and Alzheimers as well.
Chronic mild cerebrovascular dysfunction as a cause for Alzheimer's disease?
Christian Humpel, a,
a Laboratory of Psychiatry and Exp. Alzheimers Research, Department of Psychiatry and Psychotherapy, Innsbruck Medical University, Austria
Received 15 July 2010; revised 17 November 2010; accepted 19 November 2010. Available online 26 November 2010.
Alzheimer's disease (AD) is a progressive chronic disorder and is characterized by β-amyloid plaques and angiopathy, tau pathology, neuronal cell death, and inflammatory responses. The reasons for this disease are not known. This review proposes the hypothesis that a chronic mild longlasting cerebrovascular dysfunction could initiate a cascade of events leading to AD. It is suggested that (vascular) risk factors (e.g. hypercholesterolemia, type 2 diabetes, hyperhomocysteinemaia) causes either damage of the cerebrovascular system including silent strokes or causes dysregulation of beta-amyloid clearance at the blood-brain barrier resulting in increased brain beta-amyloid. A cascade of subsequent downstream events may lead to disturbed metabolic changes, and neuroinflammation and tau pathology. The role of NGF on the cell death of cholinergic neurons is discussed. Additional risk factors (e.g. acidosis, metals) contribute to plaque development.
And there is one other disease that has come to my attention;
I have been wondering about connection between Postural orthostatic tachycardia syndrome and CCSVI. There seems to be so much common in these two conditions.
"Postural orthostatic tachycardia syndrome (POTS, also postural tachycardia syndrome) is a condition of dysautonomia, more specifically orthostatic intolerance, in which a change from the supine position to an upright position causes an abnormally large increase in heart rate, called tachycardia. Several studies show a decrease in cerebral blood flow with systolic and diastolic cerebral blood flow (CBF) velocity decreased 44% and 60%, respectively. Patients with POTS have problems maintaining homeostasis when changing position, i.e. moving from one chair to another or reaching above their heads. Many patients also experience symptoms when stationary or even while lying down."
"The causes of POTS are not fully known. Most patients develop symptoms in their teenage years during a period of rapid growth and see gradual improvement into their mid-twenties. Others develop POTS after a viral or bacterial infection such as mononucleosis or pneumonia. Some patients develop symptoms after experiencing some sort of trauma such as a car accident or injury. Women can also develop POTS during or after pregnancy. These patients generally have a poorer prognosis.
In one large test, 12.5% of 152 patients with POTS reported a family history of orthostatic intolerance, suggesting that there is a genetic inheritance associated with POTS.
So far no one has provided an explanation for POTS which is applicable to all sufferers, however there are many theories;
Alpha-receptor dysfunction may be occurring in some POTS patients. Alpha-1 receptors cause peripheral vasoconstriction when stimulated. Alpha-1 receptor supersensitivity may be causing dysautonomia in some patients.
Beta-receptor supersensitivity may occur with hyperadrenergic states in some people with POTS.
Hyperdopaminergic states may be the underlying problem for some people with orthostatic intolerance. Some patients have been found to have a significant increase in upright dopamine levels. Free plasma norepinephrine also tends to be higher in these patients.
Reduced venous return is one of the main mechanisms that causes POTS symptoms. Venous return can be reduced due to conditions such as low plasma volume (hypovolemia), venous pooling and denervation. A hyperadrenergic state may result as the body attempts to compensate for these abnormalities.
Sympathetic Overactivity is observed in many POTS patients. The sympathetic overactivity can be secondary to a number of factors, some of which may be peripheral denervation, venous pooling, or end-organ dysfunction. Sympathetic underactivity can also occur in some forms of orthostatic intolerance, such as pure autonomic failure. "
Symptoms just to name few:
* lightheadedness, sometimes called pre-syncope (pre-fainting) dizziness (but not vertigo, which is also called dizziness)
* exercise intolerance
* extreme fatigue
* syncope (fainting)
* Excessive thirst (polydipsia)
* cold extremities
* chest pain and discomfort
* muscle weakness
* visual disturbances
* brain fog
* decreased mental stamina
* difficulty finding the right word
* impaired concentration
* sleep disorders"
Ring any bells?
More about POTS in Wikipedia: http://en.wikipedia.org/wiki/Postural_orthostatic_tachycardia_syndrome
I would stay far away from chiropractic claims to 'fix' MS through spinal subluxation. Chiropractic claims to cure asthma, stomach problems, neurological problems, diabetes, etc. Unfortunately any improvement is psychosomatic.
However, I think many patients with MS have POTS. I had it for about three months - never passed out, but had serious shortness of breath upon standing. When this happened I had a tightness in my neck, a little lower than halfway. Whether this is caused by my lesions on the brainstem, or by pancaked neck veins, I have no idea. But this symptom did go away, and as far as I know, the pancaked neck veins don't suddenly open back up.
Dr. Diana Driscoll With an Exciting Ehlers-Danlos Update
Posted on November 29, 2010 by Diana Driscoll| Leave a comment
What a journey this has been! Although a very challenging time, I feel incredibly blessed to know so many others on the same path. Please know that you help me, likely much more than I help you!
I wanted to reach out to those of you who suffer from POTS (or any autonomic dysfunction). This has been the most difficult aspect for most of us to deal with, and those of you who know me, understand. The symptoms can include the inability to stand beyond a few minutes, tachycardia, digestive issues, poor temperature control, anxiety, tremors, balance problems, twitches, myoclonus, fasciculation, memory problems, dizziness, fatigue, nausea, abdominal pain, weakness, hormonal fluctuations, difficulty breathing, and… well, why don’t we just stop there and take a breath?
We’ve also noticed that too many people with EDS also develop multiple sclerosis. Some of you are aware that a soft cervical collar at night time has helped us, as has Diamox (a diuretic that crosses the blood-brain barrier, taking fluid pressure off of our brains). This has been a consistent finding, but no one has been able to explain to me why it helps, and why it doesn’t eliminate the problem entirely – until now.
May I please introduce you to Dr. Michael Flanagan? He is a brilliant doctor who has been studying and researching this condition (and how it relates to M.S., Parkinson’s, and Alzheimer’s) for about 25 years! The anatomy of the skull and upper cervical spine is complicated, but the CSF (cerebral spinal fluid) flow pattern is extremely difficult to understand. Dr. Flanagan understands it down to the tiniest detail. He was able to explain to me what I have been unable to put into words for years. He knows why we can be vertical, but not for long, and feel better when we are horizontal, but not for long.
We are all different, of course, so please bear that in mind when you review his research. For our family, however, he is dead on. It’s a bit complicated to go into too much detail here, but understand that it all relates to sluggish flow of the CSF and our change in posture causing the brain to sink and rise, leading to chronic brain edema and a type of “normal pressure hydrocephalus”.
We will be having some imaging done to see if I have any blockages in my veins that could be opened (with a balloon or stent) to help with the condition. This is such a difficult condition to treat because it is dynamic (it changes with position, for example), yet medications are static (they cause one change).
Dr. Michael Flanagan just published a book on this subject called The Downside of Upright Posture. I would encourage all of you to purchase it. He also has a blog that I highly recommend: The Upright Doctor
You can reach out to him, also. I don’t know how he answers the volume of correspondence he receives, but he does so with empathy and an incredible level of knowledge. The only thing I ask of you all is that if he helps you, please spread the word. He deserves so much more than accolades for all of his work, but for now, we should be vocal with our appreciation. He has sacrificed much for all of us.
I’ll have more updates for you soon, but until then, never give up.
It's definately a good blog site with tons of information on the skull and brain. His claims for MS include Chiari, CCSVI AND Trauma. I subscibed to it as it appears to have an exhaustive amount of info.
Wheelchair Kamikazi reports on the good and bad of the whole CCSVI thing.
Dr. Flanagan also answers questions on ; http://www.********.com/ftopict-14005.html
jensequitur I can understand where you are coming from and I must say that the content of the articles and the information around this understanding of de-generative disease is the important thing here. We all have had experiences with bad mechanics and bad neuro's as well. Don't shoot the messenger till you have understood the message please. Regards Nigel
Interesting from the research perspective but a very flawed study methodology. Might lead to something if they did a "designed and blinded study," but in its current form it is pretty useless. It is the same issue with CCSVI. Lots of media hype based on a couple of non-blinded results, but once we start to look at blinded studies, the results falter. I'm all for more research, but this is junk science at this point. They key words I saw in this were "Author, Private Practice, Uncontrolled, Non-randomized Environment, five-year period." Not much science in one researcher trying to prove his own hypothesis.
> jensequitur I can understand where you are coming from and I must say that the content of the articles and the information around this understanding of de-generative disease is the important thing here.
We all have had experiences with bad mechanics and bad neuro's as well. Don't shoot the messenger till you have understood the message please.
Hey, Nigel - I understood the message - just don't agree with it! I noticed the same thing as Bob. The article is not scientific. I'll wait for actual research.
Its good to see an inquiring mind at work. The positive in this is that its is receiving attention. The only way money will be spent on research is if it creates an income source for someone in the future. This theory and observations will require more capital and finding that has always been a challenge for anything natural or not requiring drugs.
Hopefully someone with an open mind can see the benefit in researching this further.
Its interesting that you use the term blinded study have you seen the work of Dr Jelinek and his video on research data for DMD's and their quoted benefits?
Evidence, bias and conflict of interest in research and publication
FOCUS ON MS 2010
Keynote address - Professor George A Jelinek MD Dip DHM FACEMEvidence, bias and conflict of interest in research and publicationOn the biases present in medical research and publication, using MS research as an example.
This Live Presentation was recorded on Saturday 18th September 2010 at the Aotea Centre in Auckland, New Zealand
Dr George Jelinek was diagnosed with MS in 1999. As a Professor in Emergency Medicine with a background as Editor -in- Chief of a major medical journal he began to sort through the medical literature on MS. He is convinced that with a commitment to the right lifestyle changes, there is the real probability that many people with MS can live long, healthy lives relatively free of the usual problems associated with the illness. Dr. George Jelinek is the author of a number of books on multiple sclerosis, the most recent being Overcoming Multiple Sclerosis with was published at the beginning of 2010
Multiple sclerosis society Auckland region, New Zealand
Multiple sclerosis society Auckland region, New Zealand
You might want to read my journal entry. Copaxone will cost me nothing out of pocket. I already have potential damage to 75% of my neurovision system. There is no medical evidence that any change in diet or lifestyle will preserve my vision. There are multiple blinded and follow-on open label studies that Copaxone will reduce my chances of having a relapse or additional lesion load.
This is a personal decision. If they can show me life style changes that will help, I'll do them too. But, DMDs are considered the best course today with proven positive outcomes far exceeding any risk. Even the money conscious insurance companies agree with this.
I understand your point, as a person with PPMS I have challenges with the whole theory of immune system dysfunction, inflammation, and controlling the immune system with drugs that where designed for a disease in Mice that is not like MS at all. There are positive people looking at the role of vascular involvement in MS and they may not have the whole picture but they sure have the right ideas for researching the possibilities. Its early days but watch this space as they say.
Many de-generative neurological diseases have similar origins the search for the finer detail has begun.
Have you seen the conference video on TM;
Video of 2010 neuroimmunologic symposium: How to treat Transverse Myelities and demyelination of the spinal cord caused by vascular issues, blood clots. No word mention on CCSVI, but video shows that vascular issues can cause spinal cord lesions.
Docs've known that for a long time
I take it you are familiar with the content of the video? Does sound like it.
"The challenge with any DMD is when the body adjusts to it. When the patient comes off the treatment there sometimes is an acceleration in disease activity." Dr Jelinek.
If the method that is risk free and supports better health has better results than the DMD's would that not be reason enough to 'try' a safer option that has better results?
It is also very real that we as PwMS are like snow flakes, no two are the same.
Bob I am very pleased to hear that you are having success on DMD's by the way, and having choice is what keeps us going. Have you tried the diet approach at all?
Infarct of the cord have been known to cause this type of damage for some time now. Infarcts of the brain (CVA/stroke) are a much different injury. Ischemic brain disease (TIAs) are also pretty well researched. vascular pooling (varicose veins of the brain?) is something that is open to research. Infarct disease is arterial supply side disease and leads to hypoxia in the tissues. I joked about varicose veins, but that is one of the most common forms of venous pooling.
CCSVI is a venous outflow issue that causes pooling in the post capillary zone. Infarct causing TM is the equivalent of a stroke in the cord. It is an arterial event. You can infarct other major nerves outside the CNS in a similar way. If you infarct the brain, you don't get demyelination, you get TIAs or Strokes. DVTs are painful, but won't kill you... that is until they make there way through the Vena Cava and through the right atrium and ventrical and into the Pulmonary Artery where they infarct a lung and prevent oxygenated blood from reaching the Left Heart. Arterial infarct can in no way be equated with venous stasis. As I said before, this is an area for research, but I would not use the data in clinical practice at this point
Ok i just have to comment on this because 'belief' doesn't mean anything in science.
"Dr George Jelinek was diagnosed with MS in 1999. As a Professor in Emergency Medicine with a background as Editor -in- Chief of a major medical journal he began to sort through the medical literature on MS. He is convinced that with a commitment to the right lifestyle changes, there is the real probability that many people with MS can live long, healthy lives relatively free of the usual problems associated with the illness."
I think the important wordings are "convinced", "real probability", "can", "relatively free", "usual problems" sorry but where is the science, proof, logic etc. it is a theory based on opinion, that is not scientifically backed. NO one will dispute that living a healthy life style is what every one needs to be doing, but you dont find these opinions in other diseases where the cause is widely known just the ones that have the question mark hanging over them.
The thing i really dont like is the implied notion that if you arn't "committed to the RIGHT lifestyle changes" then your responsible, to blame, doing it wrong etc etc. where is the research, the scientific evidence of diagnosed MSers that have 100% committed to the "right lifestyle", with NO other medical intervention, tracked through their entire life or 20 years or 10 years even and the results are that they have "lived long, healthy lives relatively free of the usual problems associated with the illness." Seriously you will not find a single evidence based study any where in the world, so how can any person, medically trained or otherwise be so convinced?
Statements that reduce the disabling sx of MS down to "problems" is in my opinion, annoying and misleading, 'Sorry Mrs B you've got MS but its only a little problem, now if you'd just lived the right life style, here's my book its only $120.00 and this will teach you how to not have MS anymore. If you do end up in a wheel chair then we know its your fault because you wouldn't need a wheel chair if you'd been committed.'
Obviously there is passion in the diet field.
The subject of vascular involvement in MS or the other de-generative diseases is where the learning will come from.
Vascular that is brain drainage and cord drainage has implications in many diseases as the video on TM explains. The effects of back wash/reflux is becoming a field of research in itself at present. There are differences seen on MRI that are indications research and understanding is required.
The most important thing to remember in my view is that there have been changes in symptoms for some PwMS who have had angio treatment. Personally I am against stents.
The change in symptoms in my view is the opportunity in this discovery. It is rare that symptoms have been effected by treatment in MS. (Changes in Episodic occurrence have happened.) The re occurrence of symptoms when veins have restenosed is again cause for interest. The best method of dealing with problem and the understanding of the changes made by angio treatment is yet to happen.
For people to have treatment at this stage in the learning is personal choice once again. There have always been times of learning in any approach to 'disease' in medicine, when the 'treatment' is better understood is the time for people to be booking for treatment in my view.
Those who have gone before the issue is understood may be regretting their haste, and they have also advanced the learning. Hopefully once there is more research everyone will benefit.
Regarding diet most people will benefit from a well designed diet, disease doesn't like living in the healthy body, sure people still become unwell but in general we all would benefit from diet improvements.
Designed Blinded Clinical Research YES. Outcomes Research YES. Informed patients YES!.
That has not happened. People running off to have there veins "stretched" only to find out the veins don't have a muscular layer in the vessel and need a structure to keep them open. Not new news Interventional Radiologists know this stuff. The media doesn't an neither do most of the patients flying to Poland. Hype not science. I can understand the PPMS and SPMS folks looking for another option. Anything is better than nothing. Not really the same case for RRMS.
On the Diet issue, show me the studies! I have yet to see a Double Blinded Sham Controlled study study that show the diet book is worth the $120. I can think of several axioms that apply.
The first two that jump into my head are: "Caveat emptor" and "A fool and his money are soon parted." At least the DMDs do have Double Blind Sham Controlled Studies to stand on.
I think I've had my say. I'm an engineer, so I'll pick my therapy by those that can show me numbers. Sensitivity, specificity, cohorts, "p" values ... I can't sign up to "opinions" and "anecdotal evidence." I don't trust the drug companies all that much (I've done work for several,) but I trust the "self help" and "How to cure/control MS for Dummies" folks even less.
Bob it will be good when the Protols are agreed on for the testing of CCSVI then some understanding can come from what needs treating.
I notice that many people are of the belief that veins are simply not open. The findings that are of interest are the missing veins, malformed veins and problems with valves and septums, flaps and so on, as well as the reflux and deposition that happens because of the resistance to flow. Compression from muscles and ligaments is issue to be better understood. De oxygenated blood has been a known problem for the brain and cord, yet it becomes discounted in CCSVI for some reason.
Once this has advanced and the hype dropped off there can be some communication about what vascular involvement in MS and other diseases really is.
The diet is always a hot topic, I often wonder why people resist change to a more appropriate diet. The package that George Jelinek speaks about would cost something like $25 million plus to complete a double blind randomized study, who's going to stump up for that the grocer?
Funny how people knock the Swank study, must be a passion for their currant diet.
NZer1, i'm confused (nothing new there lol) are you saying there is a vascular connection to MS or not? I dont know how diet got into the conversation, but leaving that aside I know that i'm personally very interested in the vascular theory. More so since I now have vascular issues that are weird, dont follow the usual rules and still of unknown cause, i am hoping to have more answers when I see the vascular specialist tomorrow.
He lists MS on his web page, which I wasn't aware of until after discussions, so this is going to be quite interesting, though if i was told my veins would benefit from stents, I would still be asking for the scientific evidence. The resident scientist, resident engineer and resident ex-researcher (me) that live in our house wouldn't have it any other way, snow flakes not lemmings. lol
I'm 100% behind choice, though i think many people are unfortunately in the grip of 'herd mentality' due to helplessness and desperation, the mighty $ fits in there somewhere too, understandable and its natural, human nature to want to survive. Would you like to come over and chat with my son about nano technology, stem cells etc etc interesting and yes all promising theories, still waiting on the science to match the ideas, it will happen one day!
This is probably a bit OT, but the start of CCSVI treatment in the U.S. came out of an interest in the relationship between diet and vascular health. Joan Beal, the wife of the man who had the first CCSVI treatment at Stanford was initially interested in endothelial health because of the role of the blood-brain barrier in MS. The blood-brain barrier, as well as the lining of the arteries and veins, is made up of endothelial cells.
A cardiologist at Stanford named John P. Cooke wrote a book called The Cardiovascular Cure: How to Strengthen Your Self Defense Against Heart Attack and Stroke (http://www.amazon.com/Cardiovascular-Cure-Strengthen-Defense-Against/dp/0767908813). Although the book is focused on more common problems like heart attack and stroke, Joan's husband followed a program based on it to try to improve the health of his endothelium and thereby help his MS. There is more info on Joan's perspective on this at
It is actually because of her correspondence with Dr. Cooke that Joan was able to convince his colleague Dr. Dake to examine her husband's veins for reflux, which than led to the first CCSVI procedure in the U.S.
Diet is hard to study reliably in relation to almost anything. In MS, where you need to study a lot of people over a long period of time, it's particularly challenging . It's hard to control all the variables since you can't practically make people eat a totally standardized diet. It's also unrealistic to expect people to be completely compliant. How many people on here have stuck to a diet without slipping up through a whole holiday season? It's also hard to get funding since there's no pharma company or other corporation that stands to benefit. As far as I can tell, the jury is still out on any relationship between diet and MS.
Oregon Health and Science University (where Roy Swank was) is actually trying to do a study on the affect of low fat diet on MS: http://clinicaltrials.gov/ct2/show/NCT00852722
What I meant to say, but left off in my usual muddle, is that the book recommended a number of actions to improve vascular and endothelial health, most of which had to do with diet, but also exercise and supplements. Sorry that the previous post didn't make much sense.
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