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
Friday, September 21, 2012
September 21, 2012 at 9:07am
We've just learned that one target of BG-12/Tecfidera, the new oral super drug /furniture fungicide, and Nrf2 activator from Biogen, is oxidative stress. This drug uses the Nrf2 pathway to combat oxidative stress.
What is oxidative stress, and how does it impact multiple sclerosis?
I first started reading about oxidative stress when I began researching the Endothelial Health program to help my husband Jeff. I did this because his blood and body showed signs of oxidative stress. The following info is from the program.
Our bodies constantly react with oxygen as we breathe and as our cells produce energy. However, our use of oxygen is a double-edged sword: we need oxygen to survive, but as a consequence of using oxygen, highly reactive molecules, known as “free radicals,” are produced.
Free radicals are atoms or molecules with electrons which have lost their partner electron, often as a result of our respiratory or metabolic process, or from outside influences. Free radicals can disrupt the balance of nitric oxide, damage the endothelium and leave it overly permeable, allowing toxins to pass into our tissues9.
In most instances, our body has an adequate supply of antioxidants obtained from food to neutralize these free radicals, but if the body is depleted, or if there are too many coexistent factors, injury to the endothelium and a change in the balance of NO may occur.
People with MS have lower levels of antioxidants in their blood. It's a scientific fact, pwMS have serious oxidative stress.
Oxidative stress in patients with multiple sclerosis.
We have investigated the oxidative stress in the blood (plasma, erythrocytes and lymphocytes) of 28 patients affected with multiple sclerosis (MS) and of 30 healthy age matched controls, by performing a multiparameter analysis of non-enzymatic and enzymatic antioxidants--
In conclusion, the blood of patients with MS shows the signs of a significant oxidative stress. The possibility of counteracting it by antioxidant administration plus an appropriate diet, might represent a promising way of inhibiting the progression of the disease.
Oxidative stress in multiple sclerosis
Accumulating data indicate that oxidative stress (OS) plays a major role in the pathogenesis of multiple sclerosis (MS). Reactive oxygen species (ROS), leading to OS, generated in excess primarily by macrophages, have been implicated as mediators of demyelization and axonal damage in MS. ROS cause damage to main cellular components such as lipids, proteins and nucleic acids (e.g., RNA, DNA), resulting in cell death by necrosis or apoptosis. In addition, weakened cellular antioxidant defense systems in the central nervous system (CNS) in MS, and its vulnerability to ROS effects may augmented damage. Thus, treatment with antioxidants might theoretically prevent propagation of tissue damage and improve both survival and neurological outcome. Central nervous system is particularly susceptible to ROS-induced damage due to the high oxygen demands of the brain and low concentration of endogenous antioxidants.
There are many more published papers on MS and oxidative stress, and all of the end with something to the effect of ---gosh, we really should have more studies done on how antioxidants help keep pwMS healthy!
But no one does these studies, because there is NO MONEY TO BE MADE!!
You can simply go and eat more fresh fruits and vegetables, take some antioxidant supplements, vitamin D, stop smoking and drinking, exercise and take care of yourself.
This is what I explained to Jeff when our family started doing the Endothelial Health Program together. Dr. Terry Wahls, Dr. George Perlmutter and Dr. George Jelinek would tell you to do the same.
Now---how does oxidative stress fit into the CCSVI scenario?
Oxidative stress is actually found in all neurodegenerative disease---Alzheimer's, Parkinsons, MS and dementia. These diseases share two things that contribute to oxidative stress:
1. Iron deposition in brain tissue
2. Hypoperfusion, or slowed blood flow through the brain.
So, we can see that pharma is figuring out there's more to MS treatment. They've seen the papers on CCSVI research, hypoperfusion, oxidative stress and gray matter atrophy. But they will never tell you that in those words, because the want to keep selling you Tysabri, chemotherapies and other immune ablating drugs. They will, however, figure out a way to sell you a pill that addresses oxidative stress.
And you can bet your bottom dollar they are working on a drug to increase cerebral perfusion.
That's why we have to share this information, and help each other and those newly diagnosed with MS.
Because there is hope, but there will be no miracle pill.
Sunday, September 9, 2012
September 9, 2012 at 8:53am
It's important to work with your doctor and go through all of the differential diagnoses before accepting an MS diagnosis as final--especially before beginning a disease modifying treatment. For a list of 100 other diseases and medical situations which can be mistaken for MS, please see this publication:
It is apparent that diagnosing MS is not an exact science, but more akin to a process of elimination.
In the three years since I began writing about MS research, I've heard from readers originally diagnosed with MS, who were later told it was actually Celiac disease, low vitamin B12 levels, migraine, Lyme disease, ischemic disease, Hughes Syndrome, TIAs, co-infection with Cpn and other illnesses.
Please note, I do not question my husband's MS diagnosis. I question the characterization of his disease process as autoimmune. According to the McDonald criteria, he has MS. He has lesions disseminated in time and space, and had banding in his CSF.
But what is MS? Isn't is simply a diagnosis made by looking at symptoms, not aetiology?
Was Jeff's disease diagnosis related to his venous malformations and slowed collateral blood flow?
Here’s more on “undiagnosing MS” from a paper published in Neurology journal last year, authored by three neurologists. I purchased the paper to learn more, so I could share this information with you. It is entitled,
“Undiagnosing” multiple sclerosis: The challenge of misdiagnosis in MS
Three academic neurologists sent out a questionnaire to other academic neurologists in the US---they utilized names and e-mails from the Consortium of MS Centers registry and via google.
242 individual neurologists and 122 survey were completed--which resulted in a response rate of 50.4%
These neurologists were asked:
“Have you ever evaluated a patient who carried a diagnosis of MS (given by another provider) for longer than a year who, after your neurologic exam and review of lab data, you strongly felt did NOT in fact have MS?”
Nearly all respondents (95.1%) had evaluated such a patient in the past.
Over one-third (34.4%) reported seeing 6 or more misdiagnosed patients in the last year, including 20 (17.2%) respondents who had seen 10 or more such patients.
Saturday, September 1, 2012
Safety and Efficacy of Venoplasty for CCSVI-PUBLISHED RESEARCH
September 1, 2012 at 8:28am
Here is the list of published research on venoplasty for CCSVI. As the stack of publications grows, it is my hope that the media and medical establishment will refer to these studies, and the correct medical terms. This is no longer "controversial liberation therapy"
This is venoplasty, or endovascular treatment, for CCSVI.
Clinical Improvement after Extracranial Venoplasty in Multiple Sclerosis
Safety of endovascular treatment of chronic cerebrospinal venous insufficiency: a report of 240 patients with multiple sclerosis.
Catheter venography and endovascular treatment of chronic cerebrospinal venous insufficiency.
Reported outcomes after the endovascular treatment of chronic cerebrospinal venous insufficiency.
Safety of outpatient endovascular treatment of the internal jugular and azygos veins for chronic cerebrospinal venous insufficiency (CCSVI) in multiple sclerosis: A retrospective analysis
Safety profile of endovascular treatment for chronic cerebrospinal venous insufficiency in patients with multiple sclerosis.
Endovascular treatment for chronic cerebrospinal venous insufficiency
The Hemodynamic Impact of Balloon Angioplasty in Multiple Sclerosis Patients with Chronic Cerebrospinal Venous Insufficiency
Evolution in quality of life and epidemiological impact after endovascular treatment of chronic cerebro-spinal venous insufficiency in patients with multiple sclerosis.
Venous angioplasty in multiple sclerosis: neurological outcome at two years in a cohort of relapsing-remitting patients
Endovascular treatment of patients with chronic cerebrospinal venous insufficiency and multiple sclerosis.
Venous angioplasty in patients with multiple sclerosis: results of a pilot study.
Endovascular treatment for chronic cerebrospinal venous insufficiency: is the procedure safe?
For all the published research on CCSVI, please visit (and support) CCSVI Alliance