Welcome! This blog contains research & information on lifestyle, nutrition and health for those with MS, as well as continuing information on the understanding of CCSVI and cerebral hypoperfusion. This blog is informative only--all medical decisions should be discussed with your own physicians.

The posts are searchable---simply type in your topic of interest in the search box at the top left.

Almost all of MS research is initiated and funded by pharmaceutical companies. This maintains the EAE mouse model and the immune paradigm of MS, and continues the 20 billion dollar a year MS treatment industry. But as we learn more about slowed blood flow, gray matter atrophy, and environmental links to MS progression and disability--all things the current drugs do not address--we're discovering more about how to help those with MS.

To learn how this journey began, read my first post from August, 2009. Be well! Joan

Saturday, July 5, 2014

Ending a "Misadventure"

The following is an open letter to Dr. Dennis Bourdette in response to his editorial in the June 2014 issue of Neurology, entitled Venous Angioplasty for "CCSVI" in multiple sclerosis: ending a therapeutic misadventure.  This open letter has been sent to his university, as well.  I hope to continue a dialogue with the CCSVI advocacy community and neurology.



Dear Dr. Bourdette--


I was disappointed to see that your comments in Neurology only focused on one half of the two phases of the BNAC PREMiSe CCSVI trial.  The first phase, which has been largely ignored by the press and neurology,  was a case controlled study of venoplasty in 15 patients with RRMS.  Eight patients were treated with venoplasty to repair CCSVI, and the other seven had delayed treatment after 6 months.  There was an immediate improvement in cerebrospinal fluid flow in the treated group, a lessening of lesions on MRI, while the delayed treatment group showed continued MS progression, more lesions and altered CSF hemodynamics.  This phase of the study showed venoplasty, when able to restore venous flow to >75% of capacity,  created a measured improvement of CSF flow and better parenchyma venous drainage, which continued on for twelve months after treatment.   It was published in The Journal of Vascular Interventional Radiology.  (1)  Important to note that Phase 2 of PREMiSe DID NOT restore venous flow to >75%.. In fact, it only restored venous flow to 50%, and was a failure of treatment.  There are many more published studies finding a connection of CCSVI and MS and improvements after successful treatment, and they appear mainly in vascular journals and are ignored by neurology. This disconnect has become increasingly frustrating to those of us whose lives depend on the future of MS research.

As a neurologist with an endowed chair from the Swank Family Foundation, I'm sure you are well-versed in the vascular component of multiple sclerosis.  Dr. Roy Swank was documenting  "capillary fragility"  in Neurology's pages in 1958.  He found systemic subcutaneous hemorrhages in his MS patients, decades before the science of the endothelium.(2)  He also noted hypercoagulation, platelet abnormalities, and slowed cerebral blood flow in MS.(3)  Today, we understand much more about how the vasculature is involved in MS. (4)  To label research into CCSVI and the extracranial venous system as a "misadventure" is to do science a great disservice. 

In spite of the accumulating links of MS to cerebral hypoperfusion (5) and recent research as to how the vascular endothelium controls cerebral blood flow and neuronal health (6), neurological researchers remain wedded to Dr. River's EAE murine model of 1935.  This allegiance to EAE is a stranglehold far more damaging than Charcot's harness. (7)  The tragedy of PML occurred in patients receiving Tysabri infusions only because mice cannot be infected by the JC virus.  The murine model testing of Tysabri could not foretell the deadly results in humans. (8)  The mouse model of EAE is not spontaneous nor does not remit, as MS develops, relapses and remits in humans.(9)  It is time to admit that the EAE mouse model, while somewhat effective for testing immune modulating pharmaceuticals, is not helping us understand the disease process we call multiple sclerosis.  Nor is it addressing MS disability progression linked to gray matter atrophy.  

I am married to a man diagnosed with MS in 2007.  Due to his severe presentation, he was told not to expect many more days of mobility.  At the time, I noted vascular issues, including a petechial rash--the same rash Dr. Roy Swank had documented.  My husband also presented with extreme hypercoagulation and high liver enzymes.(10)  By making the connection of his disease to his vascular system, I was able to piece together peer-reviewed and published research to address these factors. Since his diagnosis seven years ago, he follows a diet and active lifestyle based on Dr. Swank's program-- combined with modern research into endothelial health and EDRF (nitric oxide), published by Dr. John Cooke, author of The Cardiovascular Cure. (11) 

He had venoplasty at Stanford University over five years ago, to resolve a severe stenosis in his left jugular vein and dural sinus. (12) Since this successful endovascular treatment, which is approved for dural sinus stenosis (13), his gray matter atrophy has reversed, as documented on MRI. This fact makes it difficult to claim his improvements are due to placebo.  He jogs, skis, mountain bikes, hikes and works full days.  Not bad for a 51 year old man with MS.  Since venoplasty, his heat intolerance is gone, his cognitive fog and fatigue hugely reduced.  His bladder issues and spasms have remitted. He no longer has central sleep apnea.  He has had no further lesions or MS progression.  And yes, he is a wonderful anecdote; as are the thousands of other MS patients who have received venoplasty and had benefit.  Or the thousands of other patients, like Dr. Terry Wahls and Dr. George Jelinek, who have changed their diets, increased aerobic exercise, stopped smoking, utilized UV ray therapy, and found hope in "alternative" cardiovascular treatments.

Where is the intellectual curiosity of neurologists?  Why the continued disassociation of the brain with the cardiovascular system and blood vessels?  

It is time to admit---neuroimmunology has failed MS patients.  This is exactly why so many patients and caregivers are turning to treatments outside the EAE autoimmune paradigm.  Neurologists must reach out, across academic silos, to include the new research of the endothelium and the vascular component of MS.  CCSVI investigation is only just beginning.  Neurology has had eighty years of EAE, and many, many failures.  The vascular endothelium and extracranial venous system deserve a bit more time and effort, before you proclaim the exploration over.

I invite a dialogue, Dr. Bourdette-- and would be happy to share your thoughts on this letter- in my blog and with the online CCSVI community.  I also invite you to consider the continuing research of the International Society for Neurovascular Disease. (14)

most sincerely,

Joan Beal

Disclosure:  Joan Beal is not a doctor.  She receives no money for her MS advocacy work.  She funds her own endeavors.  Her personal reward is seeing her husband thriving.  She writes about current MS research on her blog, Multiple Sclerosis-the vascular connection.  Joan's theory of MS is that it is a disease of endothelial dysfunction, cerebral hypoperfusion and reperfusion injury, and she invites researchers to consider the scientific evidence. Multiple Sclerosis--the vascular connection: Multiple Sclerosis -- Hypoperfusion/Reperfusion Theory

References:

1.  Zivadinov R, Magnana C,  Galeotti R, Schirda C, Menegatti E, Weinstock-Guttman B, Marr K, Bartolomei I, Hagemeier J, Maiagoni AM, Hoinacki D, Kennedy C, Beggs C, Salvi F, Zamboni P    Changes of cine cerebrospinal fluid dynamics in patients with multiple sclerosis treated with percutaneous transluminal angioplasty: a case-control study.  Journal of Vasc. Interv. Radiology 2013 Jun;24(6):829-38. 

2. Swank RL. Subcutaneous hemorrhages in multiple sclerosis. Neurology. 1958; 8: 497-498. 

3.. Swank RL: Plasma and multiple sclerosis - past and present; in: Multiple Sclerosis: Immunological, Diagnostic and Therapeutic Aspects. London, John Libbey Eurotext, 1987, pp 217-220.

4.. D'haeseleer M., Cambron M., Vanopdembosch L, De Keyser, J.  Vascular aspects of multiple sclerosis.Lancet Neurology. 2011 Jul;10(7):657-66. 

5. Narayan P, Zhou Y, Hasan K, Datta S, Sun X, Wolinsky J.  Hypoperfusion and T1 hypointense lesions in white matter in MS.  Multiple Sclerosis Journal.  vol. 20 no. 3365-373




  • Elizabeth M. C. Hillman, PhD     
  • Vascular Medicine-A Critical Role for the Vascular Endothelium in Functional Neurovascular Coupling in the Brain.   J Am Heart Assoc. 2014;3:e000787  


    7. Behan, P Chaudhuri, A.  EAE in not a useful model for demyelinating disease.   Multiple Sclerosis 

    and Related Disorders.   01/2014


        Behan, P Futility of the Autoimmune orthodoxy in MS research.  Expert Rev. Neurother. 10(7), 1023–1025 (2010)  


    8. Steinman, L  Zamvil, S  Virtues and Pitfalls of EAE for the development of therapies for multiple sclerosis, TRENDS in Immunology Vol.26 No.11 November 2005

    9. Gold, R Linington, C Lassman, H.  Understanding pathogenesis and therapy of MS via animal models: 70 years of merits and culprits in EAE research.  Brain  doi:10.1093  2006.

    10. Tremlett H, Seemüller S, Zhao Y, Yoshida EM, Oger JD, Petkau J.    Liver test abnormalities in multiple sclerosis: findings from placebo-treated patients.  Neurology. 2006 Oct 10;67(7):1291-3.  

    11. Cooke, JP. Therapeutic interventions in Endothelial Dysfunction.  Clin. Cardiol. Vol. 20 (Suppl. II), II-45–II-51 (1997)

    12. Dake MD,  Dantzer N, Bennett WL, Cooke, JP.   Endovascular correction of cerebrovenous anomalies in multiple sclerosis: a retrospective review of an uncontrolled case series.   Vascular Medicine 2012 Jun;17(3):131-7. doi: 10.1177/1358863X12440125. E2012

    13. Arac, A  Lee, M  Steinberg, G   Efficacy of endovascular stenting in dural venous sinus stenosis   Neurosurg Focus 27 (5):E14, 2009 

    14.  www.isnvd.org











    14 comments:

    1. Neurology journals "cherry pick" what they publish and are their content is greatly controlled by the large, lucrative pharmaceutical industry. If a researcher dared say something positive about CSF flow improvements after treatment for CCSVI, their funding would be affected by a company that conducts the orchestra of MS led research.

      Even when a study shows something positive, your every-day neurologist will find a way to make it look like their drugs work.

      Today the "industry" disses CCSVI, what will it be tomorrow? If we continue to let the "industry" keep the stronghold on research, the only options ever will be drug options, as they control the research, what gets published, and the funding.

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    2. Great point, Christopher. Neurology has changed course on many cardiovascular aspects of MS treatment. Until recently, patients were told not to exercise, that diet didn't matter, and that sun exposure (as measured by Vitamin D levels) didn't make a difference. We now know differently. Turns out latitude, smoking, obesity, inactivity--are all linked to MS disease progression. Cardiovascular environmental factors may be the best way to modify disease progression. It would be nice to see this science acknowledged. Until then, we have each other and the internet.

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      1. (Google translator from Italian)

        Lady Joan, I ask myself, why not integrate, into power, my drink made with juice of two lemons and about 1.5 - 2.0 micro g of powdered bone Sepia, dissolved in juice!?!? containing metabolized already!, and even better than an intravenous!, all MINERALS, TRACE ELEMENTS, including all catalysts, as well as amino acids and vitamins, if the upstream cuttlefish, dried at a temperature of 35 ° C ventilated. A friend of mine named Carlos Alfano, computer engineer, 43 years, 3 years found, officially to have ALS, born in Madrid, from Italian father Oriolo, Calabria region, ITALY, with devastating effects, because the first smoker avid, according to wrong feeding, third to significant daily stress due to his professional activity, the fourth question psychic for his marital separation. E 'on Facebook, https://www.facebook.com/carlosalfanodj?fref=ts. Well, despite all these hardships pejorative, for his ALS, I advised him to take 5 times a day, my drink mentioned above, and reported to him immediately! experienced an improvement of sleep has become deep, that is, the maximum relaxation and, in the morning, you wake up full of energy and with his Left arm and its hand, that for at least a half hour if it feels normal! and then, with recovery work and what has been said before, that is, smoking, diet, etc.. His hand arm returns to its initial stiffness. Now, I ask you, do you think little of the initial improvements, considering everything, and after a week with his lifestyle wrong?!? Then, to enhance the patina of endothelial cells, I suggested, as I have suggested to prof. Paolo Zamboni, associated with the use of Ginkgo biloba seeds Flax, Omega 3 that increases speed up the functions of Ginkgo Biloba, in addition to using the juice of Opuntia cladodes indicates, to improve its gastritis and esophageal reflux. All this, because you are very attentive to the problems of MS and its treatment alternatives, drug deleterious murderers of Neurologists, super slaves of Pharmaceutical Companies.

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      4. cancellare depennare eliminare i commenti è pari al comportamento del 98% dei Neurologi o....sbaglio?

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    3. Joan ...
      Where is the intellectual curiosity of neurologists? Why the continued disassociation of the brain with the cardiovascular system and blood vessels?

      Shirley ...
      Their curiosity has been overtaken by their own livelihood. There is no way they will ever change course as long as they have the numbers. The whole idea of their hypocrisy is gospel. There cannot be another way. This goes for all sicknesses. It is unfortunate our society shaped this kind of thinking. Just trying to turn this bogus theory around is what looks like a huge project but, we have to continue to pass the findings. It is happening. They are responding via their journals in hopes we say ... OK, you are right. This will never be discussed again. Fat chance.

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      1. I have to believe that we can appeal to the better nature in our fellow human beings, and that science will eventually prevail, Shirley. Dr. Bourdette recommends diet changes to his MS patients, and is a proponent of nutritional strategies. I'm hoping he can understand how CCSVI exploration is a continuation of Dr. Swank's research, when considering endothelial health.

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    4. Far more money in perpetuating a myth than finding a cure. MS is undoubtedly a circulation issue, it has nothing to do with autoimmune problems and those perpetuating this myth are nothing more than quacks.

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      1. The immune system reaction in RRMS is certainly part of the equation, Andrew---but we need to encourage interdisciplinary research. Vascular and endothelial researchers have much to offer neurology.

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    5. Some of my improvements may have been "subjective" because my neurologist never measured my heat intolerance, PseudoBulbar Affect, or my weekly headaches, and, therefore, had no benchmark for comparison when they were alleviated following venous angioplasty. He could, however, compare his "objective" findings relating to my lack of balance and severe right leg weakness and drop-foot because he tested these things at my annual examinations. After more than 20 years of examinations, he was shocked to see I had regained balance and was walking much better, with increased right leg strength with hardly any evidence of drop-foot when he saw me following my angioplasty. I am in possession of copies of my visits where he has documented that, following venous angioplasty, my EDSS (disability) score went from 6.5 down to 4. This is unheard of for somebody with "confirmed secondary/progressive MS".

      It's been over 39 months since my treatment and I may not be perfectly healthy because of over 20 years of nerve damage, but I'm certainly living a much better quality of life than I was before treatment! Isn't that what should matter to health care professionals?

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      1. Lori---Do you think your neurologist might be able to write up a case study on you, for publication? Cases of disease reversal in the progressive phase of MS, like yours and Dr. Terry Wahls, must be studied.

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      2. My long-time neurologist just retired a year ago. He was initially against my going for treatment and has not been vocal on my behalf, although he did submit a report to the BC CCSVI Registry (run by Dr. Traboulsee who is also in charge of the Vancouver location of the "pan-Canadian" Clinical Treatment Trial). I have gotten quite upset that Dr. Traboulsee hasn't made any effort to look at my case--at least that I'm aware of!

        I go through phases of wanting to be more assertive and think I should push for some attention, but I'm also very busy enjoying my fitness routine. My husband also gets upset when I have too many sleepless nights thinking of things I "should/could" do and wants me to just enjoy life.

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    6. Maybe before and after heat maps would work to progress from anecdote to real in the minds of neurologists? From the thermal image cameras for looking at houses? Maybe it is time to donate one of those cameras to an angioplasty surgery clinic? My wife's cold dead right hand and right leg was warm the day after the angioplasty. Significantly warm to my touch, almost fever warm! This must be measurable and one of those cameras might be an effective measure. Her entire "body heat map" must have changed. That was such a surprise as was her standing on one leg doing a thai dancer pose the next morning. (She was wobbly standing on both feet the day before). Her neuropathy pain in the right side also changed. She said here skin was "burning from the inside out" instead of "burning on the surface". The pain itself seems to have abated a lot, she does wake me up with her crying in the middle of the night since the operation.

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