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

Friday, September 23, 2016

Lipoic Acid improves MS and Endothelial Health

An inexpensive over the counter supplement, Lipoic Acid, has been shown to decrease brain atrophy and increase walking speed in people with secondary progressive MS.

Participants took 1200mg. of lipoic acid daily, while others took placebo.  And there were improvements shown in the pwMS--so much so, that neurologists are talking about it at ECTRIMS, in a recent oral presentation at the conference.

"There is a great unmet need to find a disease-modifying therapy for progressive MS. We wanted to look at lipoic acid as possibly filling this role since it's a small-molecule agent that, because of its low cost, could be readily available to anybody who needed it," said Dr Spain.

As I've written many times on this page, it is MUCH easier to test one supplement at a time against placebo, rather than having a trial for an entire lifestyle program.   This is why "gold standard" drug or supplement trials get all of the research dollars and attention.  So, it's at least nice to see a trial of a supplement which has no harmful side effects.

What is Lipoic Acid (LA), also known as a-lipoic acid (ALA) and how does it help people with MS? 

Lipoic Acid (LA) is found in almost all foods. Highest levels are found in organ meats, broccoli and spinach.  Tomatoes, peas and brussel sprouts also have higher levels of LA.

LA is an anti-oxidant, and prevents damage due to oxidative stress. 
It has been tested and found to be helpful for people with metabolic syndrome and diabetes---because it improves endothelial function. 

That's right.  LA helps the vasculature and blood flow.  You won't be reading that in any neurology press releases any time soon, but this is a fact.  LA increases blood flow, via dilation of vessels through endothelial health.  And this could account from the maintenance of gray matter and improved walking times in people with MS.  

But you know what is even better than simply taking LA or biotin or any other supplement?  Using an entire lifestyle program-- including nutrition, exercise, stress reduction, UV ray exposure-- which is shown to reduce oxidative stress, increase endothelial health and protect your brain.

It's not a pill,  it's a lifestyle.

Monday, September 5, 2016

Eating Food

I love food.  And because of this love, I've dealt with weight issues my entire life.  By the time I was 12 years old, I weighed in at 180.  A good weight for a "light heavyweight" prize fighter, but for a young girl in middle school, not so much.  As a result of this enthusiasm for food, I've tried a variety of ways to keep myself slim.  Liking boys and in turn wanting them to like me was the first motivator to join Weight Watchers.  It took almost two years, but I dropped 60 pounds.  By the time I was 14, I'd lost my baby fat, but had discovered the confusing world of dieting.

Diets do not work.  By that I mean, deprivation and punishment are no way to live.  Because as soon as you end the diet and return to "normal" life, the weight will return.  Trust me, I've yo yo'd enough to know.  That's why I always use the word "lifestyle."  Living in a particular way, with certain habits, is the only way to maintain health.

Food matters.  It is our means of taking in nutrition.  Our bodies rely on a good intake of antioxidants, which come from colorful plants and spices.  Envision blueberries' deep color or the vivid orange of curcumin.  The staining red of fresh beets and the deep green of kale.   We now know that our microbiome, the 2 pounds of bacteria which live in our guts, are responsible for the health of our brain.  The microbiome maintains our neuronal network, our neurotransmitters and hormone production. link to science  If we do not provide enough good prebiotic food for the good bacteria by means of colorful fruits and vegetables, we starve the good bacteria, and allow the bad to overtake the territory.  link  The survival of our microbiome, and in turn our brains, means choosing the right foods.

In 431 B.C., Hippocrates knew that food was the best medicine.

And there is a reason why researchers, like Dr. Terry Wahls, are honing in on the right diet to maintain the health and integrity of our bodies.  It's not because they are some sort of passionless creatures, attempting to take all of the fun out of eating, to make us suffer longer lives in healthy boredom.   It's because they understand the science behind nutrition, and they want to help us feel better.

There is a lot of confusing information out there.  We all read the news stories and click bait articles--DON'T eat bananas if you want to lose belly fat, ONLY drink lemon water with maple syrup, mix a protein and a carb, coconut oil is the way to beat Alzheimer's or the worst thing in the world.  Should I try paleo or vegan??? Wait, do coffee drinkers have less strokes or more cancer?  What the heck is gluten, anyway?  It's difficult to know what to believe.  And if you're like me, you don't want to take all the fun out of having a meal.  Sitting down with loved ones over a delicious meal is one of the true joys of being human.  We're not science experiments in a lab.

When I started changing up our family's meal plans almost ten years ago, I got a ton of pushback.  Let's just say that Jeff was not thrilled I stopped buying processed meats and cheese.  He loved both of these food groups so much, that he could have happily lived on sausage, cubes of cheddar, with a frosty diet Dr. Pepper to wash it all down. Suddenly, dinner was a piece of fish with a big leafy salad.  His "snacks" were now almonds and dried blueberries, or an apple.  Really???  What happened to the steaks and pasta with cheese?  And where was the mayonnaise?  Why, exactly,  couldn't he have a diet soda?  It's diet!!!  Let's just say, he was not happy, and I heard about it.  But I carried on, trying out new recipes and buying only organic and no prepared foods.  This meant more work for me, but I knew it would be worth it.

After about a year of this new lifestyle, we felt better.  We both lost our middle age love handles, our energy was better, we were sleeping well, we were staying active with less joint pain and better mobility. Less constipation, no heartburn, and our blood tests were coming back with astounding numbers.  No high CrP, low cholesterol, no inflammation, great liver enzymes, great vitamin D, perfect red and white blood cell counts.  Our doctor joked with us that if she just saw our serum markers, she'd think we were in our twenties. The truth is, we didn't feel deprived at all,  because we had found healthy substitutions for all of the foods we were missing.

Here's a few of our lifestyle hacks---the reason we still love to eat, and don't feel deprived.

Instead of:                     We have:

Crackers n'cheese    carrots, jicama sticks,
                                 pea pods w/salsa/guacomole

Potato Chips             home roasted
                                  sweet potato fries or home roasted kale chips

Ice Cream                 Yonanas
                                  frozen fruit dessert   http://yonanas.com

Pasta Alfredo           Eggplant moussaka
                                 w/garbanzo beans

Mayonaise               Hummus

Cold cuts                home roasted
                               organic chicken

Milk                     almond milk

Candy                   dried blueberries,
                              fresh strawberries, grapes

Bread/buns          corn tortillas
                            or lettuce wraps

You might notice that our substitutions look an awful lot like a Mediterranean Diet--and indeed, that's what we've grown to love.  (You can, too!!  link )  Tons of fresh fruits and veggies, less animal products, olives and olive oil, nuts and beans, LOTS of spices, and no more processed food.

I like to think of this lifestyle as Foods Made in Sunshine.  All of the ingredients we consume need sunshine in order to be produced.  Nothing originates inside a factory.  All of our food comes from the great outdoors.

I also like to think of this way of eating as "Yes, you can" rather than "No, don't have that!"  By replacing the mindset of deprivation with one of plenty and gratitude, we can enjoy what we eat, and not suffer with iceberg lettuce and a sad tomato slice, wishing it was something else.

Hope this is an inspiration for those of you wanting to try a new lifestyle.  Shaming never worked for me when I wanted to lose weight or feel better.  Deprivation wasn't the way for me or my family.  But finding positive and healthy ways to think about food has been the key.

Wishing you and yours health and wholeness.  And lots of happy eating.

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.


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,