Welcome! This blog contains research, information on lifestyle, nutrition, dietary supplements 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 15 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

Wednesday, August 31, 2016

MS Mi$diagnosis

Most people assume that diagnosing multiple sclerosis is easy, but nothing could be further from the truth.  Diagnosing MS is a challenge, as there is no specific biomarker or blood test for the disease.  Other diagnoses, mostly caused by vascular issues like migraine or TIA, also show white matter lesions on MRI.  In fact, white matter lesions are up to 500 times more likely to be related to a vascular condition than MS! link  Even oligoclonal banding tests are non-specific for MS, as people with ischemic stroke have similar markers in CSF.   link

It's far too easy to misdiagnose MS;  a disease named for its symptom (many scars) and diagnosed by neurologists.  Neurologists have supposed eminence in MS diagnosis, which I believe has created a huge blind spot towards vascular evidence.  More on eminence vs. evidence based medicine
Maslow's theory also comes to mind:  "If all you have is a hammer,  everything looks like a nail."

Dr. Andrew J. Solomon, neurologist from the University of Vermont College of Medicine, has been publishing on this problem for many years.  He is lead investigator in a new study on MS misdiagnosis, presented at the recent AAN conference in Vancouver. link

Dr. Solomon's latest study was just published online in Neurology. Twenty four American MS specialists reviewed the cases of 110 patients who were misdiagnosed with MS, gave them correct diagnoses and then published their results.

The time for carrying a misdiagnosis was 3 to 9 years in 29% of patients and 10 to 20 years in 26% of patients.  31% of the patients experienced "unnecessary morbidity", which means they suffered for no reason.  How did that happen?  They were given drugs with dangerous side effects, which they did not need.

According to the study findings, 72% of the misdiagnosed patients (Edit: that's 79 people!) took medication to treat a disease they didn't have, some took these medications for many years. Four of the patients misdiagnosed with MS had participated in clinical trials for experimental MS therapies.

"This study suggests significant and long-term unnecessary risk for these patients," Solomon says.

Some of the treatments for MS carry serious side effects. One drug, taken by 13 percent of the misdiagnosed patients, can cause a potentially fatal brain infection, Solomon says. (Edit: 14 misdiagnosed patients were given Tysabri!) Other patients suffered from the discomfort and inconvenience of daily injections, others experienced side effects from medications, and finally, they lacked treatment for their actual correct diagnoses.

link

Other misdiagnosed patients were given mitoxantrone and cyclophosphamide.  This is absolutely unconscionable. I hope these patients find legal representation and are compensated for their pain, morbidity and suffering.  They deserve it!

Here's a recent news story, where two women took the neurologist who misdiagnosed them with MS to federal court.  These two women filed separate negligence law suits against Dr. Gary M. Weiss, a former Vail Colorado based neurologist, who misdiagnosed them with MS using his own MRI lab, and them put them on MS drugs.   One woman was wrongly given over 100 infusions of Tysabri.   Over 20 of Dr. Weiss' MS patients now claim they were misdiagnosed.  link to news story Shockingly,  Dr. Weiss is still treating patients, as a practicing neurologist in Florida.

The problem highlighted in this lawsuit is that many neurologists see dollar signs when they diagnose M$.  An MS diagnosis means ongoing care, high fees for infusion centers or MRI centers, lots of prescriptions, and a patient for life.  Many neurologists receive kickbacks from pharmaceutical companies, in the form of honorariums, speaking fees and fees for enrolling patients in clinical trials.

Maran Wolfston, an MS patient and doctoral student, investigated her neurologist when she felt he was pushing her use specific MS drugs.  She later published her revelations.  Her neurologist first encouraged her to enroll in a clinical trial, and after she declined he told her she would need to begin Tysabri infusions.   Sure enough,  using the Dollars for Docs site sponsored by Propublica and thanks to the Affordable Care Act, she could search her neurologist's payments from pharmaceutical companies.  (You can, too! Link to Dollars for Docs )  She discovered her neurologist was receiving major payments from Biogen--the sponsor of the clinical trial he had recommended and maker of Tysabri.  She has published a paper on the result of her "loss of trust."
I knew that I had felt pressured to take medications by my neurologist. When I found that he had been paid large sums of money—six times my yearly salary—to work for the manufacturers of those same drugs, my loss of faith was complete. I never returned to his neurology clinic again.   link to paper
There is no similar monetary incentive for the diagnosis of vascular disease.  Neurologists only consider their particular "hammer" of immune modulating drugs and then they assert their eminence. And patients are too intimidated, sick and overwhelmed to ask questions.

Here's more from the lead neurologist, who also published in 2012 Link to "Undiagnosing" MS.  Dr. Solomon half-heartedly tries to rationalize the hair-trigger response in prescribing drugs:

In patients diagnosed with MS, prompt initiation of treatment with immune modulating therapies is often appropriate, so, notes Solomon, "There is pressure to make the diagnosis of MS early, and to start patients on MS therapies quickly. But in some patients who do not meet rigorous standards for diagnosis, waiting longer and close follow-up may determine the correct diagnosis."

Making sure the diagnosis is correct and waiting seems like the best idea.  Many studies now show that starting patients early on MS drugs might decrease relapses, but makes no difference in long term disability or MRI results, so why not wait to prescribe Tysabri or mitoxantrone??

Better still, why not first address the more common cardiovascular causes of white matter lesions, and truly make MS a diagnosis of exclusion?

White matter lesions on MRI, a supposed "hallmark" of MS, appear most often in vascular conditions.  These conditions include antiphospholipid syndrome (Hughes Syndrome), migraine, stroke, and transient ischemic attacks.  Any of these vascular conditions---which all involve a disturbance of cerebral circulation and hypoperfusion--can exhibit white matter lesions on MRI.  

White matter lesions on MRI are up to 500 times more likely to be related to vascular disease than MS.   link  The idea of MS lesions being related to the vasculature and slowed cerebral blood flow is not new. link  People with MS have cerebral circulation 2X slower than healthy controls.  link

If you know someone who has recently been diagnosed with MS and questions their diagnosis, or if you have questions regarding your own diagnosis---please--go through the list of differential diagnoses with your doctor or get a second opinion, especially before taking any disease modifying drug.  link

And if you have any vascular issues, like hypercoagulation, blood clots, migraine, high blood pressure, obesity, TIAs, stroke, high inflammation (C reactive protein) or venous disease---please, talk to your doctor about addressing these issues.  If there are vascular commorbities, there is a chance that in addressing vascular problems you may never require disease modifying medication.

Be a patient like Maran Wolfston---be knowledgable, ask questions, do your research.
Be that patient (or caregiver) almost every neurologist dreads.
Make them roll their eyes.
Trust me, the momentary embarrassment is worth it.

be well,

Joan








Thursday, August 18, 2016

ECTRIMS '16

The European Committee for Treatment and Research in MS (ECTRIMS) is gathering for their yearly conference in London this September.link I thought it might be interesting to see if any researchers are going outside the EAE autoimmune model of MS, to discuss the connection of MS to the vascular system, as there have been many breakthroughs in this area during the past year, thanks to 7 Tesla MRI and published research on the heart brain connection, endothelial dysfunction, coagulation cascade activation, microbleeds and hypoperfusion in MS.  

Using the search term "vascular",  I found one reference.

Under the Teaching Course heading of "MS Brain Health", which is being chaired by Dr. Giovannoni of London (oh, the irony!), Dr. Ruth Ann Marrie from Canada will be presenting on her research regarding vascular commorbidities in MS.  link  Dr. John Saxton from Newcastle, UK, will also be discussing "Lifestyle Modifications" in MS.  

This area of discussion is new to ECTRIMS.  MS researchers are loath to acknowledge any connection of the MS disease process to vascular health.  The language they use to broach this subject shows just how reticent they are to give up any ground to vascular specialists--just notice the wording of the paragraph below.  But they have to talk about this now, as the science is in, and the elephant in the room must be addressed.  The heart and brain are connected.

Although multiple sclerosis (MS) is an inflammatory neurodegenerative disease of the central nervous system numerous systemic and lifestyle factors affect MS outcomes. In summary Brain Health refers to a holistic approach to the management of multiple sclerosis that focuses on MS-specific, and MS non-specific, factors that are modifiable. An important aspect of brain health is the empowerment of people with the disease to make them understand that there is a lot they can do themselves to self-manage their own disease. The course will review the philosophical underpinnings of brain health and the shift to treating MS more actively and to a target. To optimise outcomes for people with MS we have to actively monitor the disease. An important part of brain health is the screening for, and the active management of, comorbidities, or other diseases, which have been shown to have a negative impact on MS disease outcomes. Examples include smoking, hypertension, metabolic syndrome and obesity. As part of managing MS, and comorbidities, people with the disease need to adopt a healthy lifestyle, including regular exercise, a healthy diet and good sleep hygiene. The lifestyle issues not only have the potential to improve MS outcomes, but may improve wellness of people with MS. At the end of the teaching course attendees will know about brain health and how to optimise MS outcomes. They will know how to screen for, diagnose and treat the common comorbidities and will know how important it is to address lifestyle issues when treating people with MS.

There was an interesting poster on coagulation factors elevated in both RRMS and SPMS by Kerstin Gobel  link 

But sadly, this is all there is on the ECTRIMS site regarding the connection of MS to vascular health. Using the following search terms, I found nothing on the endothelium, cerebral microbleeds, venous hypertension, fibrinogen, aerobic exercise, nitric oxide, epigenetics, environmental factors.  There were a few scant mentions of Vitamin D or cardiovascular lifestyle factors.  And CCSVI is gone.  

I'm not sure how ECTRIMS can continue to call itself a research organization, when all of the presentations are focused on disease modifying drug studies and the EAE animal model of MS, but there you have it.  MS is now a 20 billion dollar a year industry, and the gate keepers want to keep it that way.  Afterall, it's pharma that throws this party every year.   

In the meantime, do all you can to help yourself by optimizing vascular health with exercise, whole food nutrition, smoking cessation, Vitamin D optimization, and good sleep.  All part of the Endothelial Health Program.

When this gang goes to the trouble of mentioning it, you have to figure there's probably something there.
Joan


Monday, August 8, 2016

CCSVI included in Oxford Textbook of Vascular Surgery

"The Oxford Textbook series is the foremost international textbook of medicine. Unrivalled in its coverage of the scientific aspects and clinical practice of medicine and its subspecialties, it is a fixture in the offices and wards of physicians around the world."

The new edition of the Oxford Textbook of Vascular Surgery, edited by Matthew M. Thompson, professor of vascular surgery at St. George's Medical School in London, includes articles from "130 global experts."  The new edition features a full chapter on Chronic Cerebrospinal Venous Insufficiency (CCSVI).  Authored by Dr. Paolo Zamboni, Sergio Gianesini and Erica Menegatti from the University of Ferrara, this chapter is included in a section on diseases of veins and lymphatics.  link

While MS specialists and neuroimmunologists have disparaged and intentionally misrepresented Dr. Paolo Zamboni's vascular studies, he has continued to publish, undaunted.  He, along with the International Society of Neurovascular Disease,  have explored how the venous system affects neurodegenerative disease.  He has improved cerebral venous return using open surgery and venoplasty, and has documented benefits in the health of his patients.  He has created a brand new CCSVI diagnostic center at the University of Ferrara, while collaborating with international space organizations, to understand the affects of microgravity on the venous system.  As I have said before, if rocket scientists collaborate with Dr. Zamboni, why can't MS neurologists?  If the Oxford Textbook editors consider his research expert and important enough to include in this new publication, why the continued naysaying from neurology?

Heartfelt thanks to Dr. Paolo Zamboni and the entire vascular department at the University of Ferrara.  Thank you for continuing your research and exploration, even while confronted with unprecedented hysteria and vitriol from the neurological community.

CCSVI exists.  Slowed venous return to the heart harms the central nervous system, just as slowed venous return harms every other major organ in the human body.   This is scientific fact.  Whether or not MS specialists choose to acknowledge the science remains a moot point.  Vascular specialists understand this, and will continue to treat patients and push the research forward.  This is how medical science evolves, one peer-reviewed publication at a time, until the stack becomes undeniable.  Financial incentives, pharmaceutical payouts,  cognitive dissonance, and territorial medical silos cannot stop it.

Share this information with vascular specialists at your local universities and hospitals.  Fund research and support groups like the ISNVD.  Insist that "charities" and organizations who purport to be helping people with MS include vascular specialists on their medical advisory boards.  Question the status quo.

And most importantly, do all you can to improve your own heart and endothelial health.  Because this is real-- the heart and brain are connected-- and there are things you can do today to help yourself.  No prescription necessary.

Be well,
Joan