Thoughts about Food.

The Paleo Diet’s doing good things for me.

For a while there, I was not sure whether or not the paleo diet was making any real difference in my life. As of Valentine’s Day, I am sure that it’s doing good things. What significance does Valentine’s Day have? I broke diet for half the weekend. Chocolate. Sushi. Cheeseburger. Pad Thai. I was loving the break… until Saturday night (1 full day into the sugar and wheat binge), when I had so many time-travel seizures that even Adam lost count.

I am now trying to figure out if I have a problem with wheat (since gliadin antibodies are higher in folks with MS, suggesting a sensitivity to wheat), dairy (which would make sense since MS has been linked to consumption of cow’s milk), a combination of the two, or something completely different. I’m not too worried about legumes, since the only legumes I had were crushed peanuts in the pad thai, and that was during Saturday night’s seizure funfest.

I got back to sticking to the diet on Sunday, and had a total of 1 seizure that day, which was a simple partial. (No time travel!)

Splenda – not so sweet.

In the last several days, I’ve also been doing some research on Splenda. There have been a lot of hoaxes and half-true infographics circulating around FB recently, and I’m genuinely worried for my folks, who drink it in beverages regularly. I found a bunch of studies that claim that sucralose is totally safe for you as long as you don’t have too much. I was more concerned with finding peer-reviewed studies that were not funded by the makers of Splenda or a sugar corporation.

Here’s what I found:

Splenda is not an inert compound.
“Sucralose and one of its hydrolysis products were found to be mutagenic at elevated concentrations in several testing methods. Cooking with sucralose at high temperatures was reported to generate chloropropanols, a potentially toxic class of compounds. Both human and rodent studies demonstrated that sucralose may alter glucose, insulin, and glucagon-like peptide 1 (GLP-1) levels. Taken together, these findings indicate that sucralose is not a biologically inert compound.”

Splenda is immunosupressive.
“The cumulative suppression of Interleukin-6 and Interleukin-10 levels induced by sucralose may contribute to the inability in mounting an effective humoral response when posed with an exogenous threat.”

“[E]xposure to sucralose induces a reduced humoral response that may be associated with adverse effects on the immune system.”

Splenda can reduce glucose absorption and can increase the presence of cholesterol in your blood.
“It could be concluded that consumption of sucralose didn’t induce oxidative stress, has no effect on insulin, reduce glucose absorption and intensify hypercholesterolemia in STZ-induced diabetic rats. Accordingly it is advised that diabetic people consuming high amount of sucralose must check their lipid profile to avoid diabetic complications.”

The more Splenda you consume, the higher your likelihood of developing leukemia.
“Dr. Morando Soffritti, director of the Ramazzini Institute in Bologna, Italy, and team fed 843 laboratory mice varying doses of sucralose from when they were fetuses until they died. Post-mortems showed an association between leukemia risk and lifetime sucralose consumption – the more sucralose they consumed, the higher their risk of leukemia.”

Splenda is a known migraine trigger.
“This observation of a potential causal relationship between sucralose and migraines may be important for physicians to remember this can be a possible trigger during dietary history taking.”

Splenda can negatively affect your insulin response, if you’re obese and haven’t been regularly using it.
“[S]ucralose affects the glycemic and insulin responses to an oral glucose load in obese people who do not normally consume NNS.”

I don’t think there’s such a thing as a safe artificial sweetener right now. Thankfully, liquid stevia, raw honey, and maple syrup are ok.

Not Letting MS Win.

Adam and I have been very committed to fitness over the last year. We’ve changed many of our eating habits for the better, learning how to live without wheat and adding many more veggies to our diet. We also managed, most weeks, to get to the gym 3 times. This year, we’re going for 4 times a week. While I haven’t seen much in the way of weight loss, my body has reshaped, so that’s a step in the right direction. I know I’m building muscle. I tell you all this not to brag, but because it’s relevant.

So Ridiculously Counterintuitive…

Monday and Tuesday of this week, I was dealing with some pretty intense MS fatigue. The idea of going to the gym was ludicrous to me. (Hey, I’m having a hard time walking to the bathroom fast enough. I know! Let’s lift weights!)

Now, you have to understand, MS fatigue is utterly and completely different from being tired. You can be in a great mood, be motivated to do things, and quite literally not be able to make your body move without extreme effort.  You can be extremely sleepy and not able to actually sleep. Sometimes, it’s like wearing a lead apron over your whole body. At other times, it feels an awful lot like turning into a weak puddle of goo.

This graphic perfectly represents what MS fatigue does to you.

This is what MS fatigue does to you.

“The exact mechanism of MS fatigue is not known, but studies suggest that changes in the brain caused by MS may require MS patients to use five times more effort to complete a simple task than a person without MS,” says Julie Stachowiak, PhD, author of The Multiple Sclerosis Manifesto: Action To Take, Principles To Live By.

Never being one to take things lying down (literally!), I had to research ways to combat fatigue.

The most consistent suggestions on the internet were pharmaceuticals (like ProVigil) that I can’t take thanks to hypertension, simplifying your life (which doesn’t help when you’re already in the throes of the beast), treating depression if you have it (check!), and exercise.

That’s right — exercise.  When it’s hard to move… move more. It sounded bassackwards to me. I was actually angry thinking about it.

But it works!

According to the National Center on Physical Activity and Disability (NCPAD), “A study conducted by researchers at the University of Utah demonstrated the benefits of exercise for people with MS. Those patients who participated in an aerobic exercise program had better cardiovascular fitness, better bladder and bowel function, less fatigue and depression, a more positive attitude and increased participation in social activities.”

More recently, a 2013 study conducted by scientists at the Division of Physiotherapy and Rehabilitation at Istanbul University demonstrated that supervised group exercise training is effective in improving balance, functional status, spasticity, fatigue and quality of life in moderately affected people with multiple sclerosis, with no worsening of their clinical status.

So, despite my goo-like status late Tuesday, I cowgirled up and went to the gym. Mind over grey matter. I was honestly shocked by the immediate results.

Sure, I went slower on the stationary bike than I usually do (It was so tough!), but after about 20 minutes of entirely willpower-driven strenuous activity, I was no longer desperately wishing for sleep or even wanting to quit. I felt the heavy, pressing feeling lift. I suddenly had energy like it was a normal day. I was even able to finish up my 30 minutes on the bike and do a 15 minute cool-down on the treadmill. Like a boss.

Exercising = Having Energy

I have a theory about MS fatigue and when it hits me hard.

Last week, we went to the gym 4 times (M,T,Th, &F), and then we took the weekend off. After 2 full days without any exercise, I had some of the heaviest fatigue I’ve experienced… so I took Monday off too, thinking that my body needed the rest. (Wrong.)  Tuesday morning, I was certain I’d been run over by a steam roller in my sleep… but Tuesday night, I hit the gym. Today, after working out regardless of fatigue, I feel significantly better than I did the last 2 days.  If not for the tingling paresthesia in my back, I’d actually feel normal. Then again, I’m so used to the tinglies on my back that maybe this is “normal” for me.

Anyway, my theory is that my body now requires that I work out almost every day for it to function properly. When I take more than 1 day off from exercise, I experience fatigue. And fatigue sucks so much. It’s like gravity is trying to crush both your body and your spirit. Last night, I actually had the thought that cycling was like mining for energy… that cardio, for me, is like plugging myself into a charger. I honestly think that daily cardio exercise is going to be the only way to keep fatigue at bay.

If it really is this simple, maybe this crazy broad wasn’t as insane as I thought she was.

Neither of us is going to let MS win.

U.C. Irvine immunologist is getting the chance to create a new line of neural stem cells!

According to News Medical, an immunologist at U.C. Irvine has been awarded a $4.8 million grant to create a new line of neural stem cells to treat multiple sclerosis!

The novel approach of creating this new line of neural stem cells is that it not only would encourage the deterioration of myelin to slow or halt, but to even potentially be repaired!

Neural stem cells are hypothesized to be able to repair not only damaged myelin but also the entire damaged nerve cell, thus restoring abilities to those of us with multiple sclerosis who have been disabled by the disease.

This is considered one of our best hopes for regenerative therapy, and so I’m very excited about this treatment, especially for the thousands out there who are more affected by the disease than I am.


Scientists Have Found A Way To Stop MS Progression!

I am too excited to actually write my own article about this! So, I am going to commit an act of blatant plagarism and then link to the original site. I am sorry about being so lame, but they have figured out a way to stop the progression of MS simply by blocking a protein! THIS MEANS THAT FOR PEOPLE LIKE ME, WE SOON WON’T HAVE TO WORRY ABOUT GETTING WORSE ALL THE TIME!!! IT IS SO EXCITING! I am adding in bold in certain areas because I think there are some things that are important to note – all emphasis is added by me.

Professor Claude Bernard and Dr Steven Petratos are two of the doctors responsible for finding a way to halt the progression of multiple sclerosis in patients.

Led by MISCL’s Dr Steven Petratos, also of RMIT University, and Professor Claude Bernard, the research team found that a modified version of CRMP-2 is present in active MS lesions, which indicate damage to the nervous system, in a laboratory model of MS.

The modified CRMP-2 interacts with another protein to cause nerve fibre damage that can result in numbness, blindness, difficulties with speech and motor skills, and cognitive impairments in sufferers.

When either the modified CRMP-2 or the interaction between the two proteins was blocked, using a method already approved in both the US and Australia, the progression of the disease was halted.

Director of MISCL, Professor Richard Boyd said the discovery could lead to new treatments for MS.

“Blocking the same protein in people with MS could provide a ‘handbrake’ to the progression of the disease,” Professor Boyd said.

Dr Petratos said the method used to block the protein was approved for the treatment of other disease conditions by both the US Food and Drug Administration and Australia’s Therapeutic Goods Administration.

“This should mean that clinical trials – once they start – will be fast tracked as the form of administration has already been approved,” Dr Petratos said.

MS Australia estimates that the disease affects more than 20,000 people in Australia, and up to 2.5 million worldwide. The disease tends to strike early in adulthood, with women three times more likely than men to be diagnosed. The total cost to the Australian community of the disease is estimated at $1 billion annually.

The research received major funding from the National Multiple Sclerosis Society of the United States of America and partial funding from MS Research Australia.

Provided by Monash University (news : web)

What To Eat and Not To Eat If You Have MS

Okay, so I’ve quit the paleo diet for the time being because it’s a hairy pain in the butt from time to time to constantly be cooking all of your own food, and because part of me worries that it’s a fad.

That doesn’t mean that it’s a wrong diet to be on. It just means that for right now, I’m on hiatus from it.

I spent more than an hour on the phone this morning with a nurse from Shared Solutions, the care team from Copaxone, discussing multiple sclerosis, and how to treat it.

MS is a disease of inflammation, and so, if we’re going to do our part to eat well, we should eat foods that are anti-inflammatory.

You can best help your body eliminate inflammation by reducing stress, removing sugar and processed foods from your diet, and by getting more sunshine! Even if you’re not going for a walk, and you’re sitting on a computer, try to get it outside!

Foods That Help Eliminate Inflammation

  1. Vegetables in the Broccoli Family: Broccoli, Cauliflower, & Broccolini
  2. Oils high in Omega 3, such as flaxseed oil, canola oil, or hemp. Olive oil is ok too.
  3. Fish high in Omega 3s – Salmon, Sardines, Herring, and Black Cod
  4. Spinach has carotenoids, one kind of inflammation-reducing antioxidant and it also contains vitamin E.
  5. Onions contain quercetin, a potent antioxidant that can help your body fight inflammation.
  6. Garlic contains sulfur compounds that stimulate your immune system to fight disease.
  7. Tart cherries! They’ve got better anti-inflammatory powers than aspirin, believe it or not!
  8. Pineapple contains bromelain, an antioxidant that boosts your immunity.
  9. Soaked Walnuts. It’s important to soak them to remove the enzyme inhibitor.
  10. Ginger, Tumeric, Curry, Oregano, Rosemary, and Green Tea contain bioflavonoids and polyphenols that reduce inflammation and limit free radical production.”

Foods to Avoid

  1. Sugar – It causes inflammation. Nuff said.
  2. Corn, Safflower, Sunflower, Peanut and Soybean Oils that are high in Omega 6
  3. Trans Fats
  4. Dairy Products: Why? Because it has cassien, which is a common allergen that causes inflammation.
  5. Feedlot-Raised Meat: because the meat was fed inflammatory food, like soybeans and corn, which means when we eat the meat, we’re also eating the inflammatory agents of the legumes and grains that are in the meat.
  6. Red Meat & Processed Meat: Why? Researchers at the University of California San Diego School of Medicine found that red meat contains a molecule that humans don’t naturally produce called Neu5Gc. After ingesting this compound, the body develops anti-Neu5Gc antibodies – an immune response that may trigger chronic inflammatory response. And low-grade simmering inflammation that won’t go away has been linked to cancer and heart disease. And multiple sclerosis. Much as my husband will hate this, it means no beef, lamb or pork, including hams, sausages and salami.
  7. Booze. I don’t think I need to qualify this one.
  8. Refined Grains. They are devoid of fiber and vitamin B compared to unpolished and unrefined grains that still have the bran, germ and the aleurone layer intact. This makes refined grains as good as refined sugars, which are practically empty calories. UNREFINED GRAINS ARE OKAY! As long as you are not allergic or intolerant to gluten, go for minimally processed grains. Check labels and go for things made with 100% whole grains.
  9. Artificial food additives/Exitotoxins: NO MSG, aspartame, or the like.
  10. Nightshade vegetables like tomatoes and potatoes, if you’re having real problems.

As I put this together, I can’t help but notice that there are many similarities to the Paleo Diet, but there are a few differences that are obvious, like the inclusion of whole grains if you do not have gluten intolerance, the complete exclusion of all red meat, and the exclusion of tomatoes and potatoes.

Since I quit the paleo diet, I have broken out (yay acne!) and gained weight. So it’s obvious to me that I have unnecessary inflammation going on. I think if I tried to follow these rules, I would probably feel better, lose weight, and be happier.



HAWMC Day #22 – The Things We Forget. Visit and make your own version of a short memo reminder. Where would you post it?

Before today, I’d never been to Things We Forget, but it’s very cute.

Here’s my post-it.

I would post it near bus stops, clinics, and mall parking lots… because the world needs more people smiling!

Did you know that when you smile, it boosts your immune system?

Not only that, but it also lowers your blood pressure and reduces stress!

What’s even better is that when you smile, the world smiles with you, and happiness multiplies for you and other people.

Smiling Releases Endorphins, Natural Pain Killers, Dopamine, and Serotonin!

So you can see, smiling is one of the best things that someone can do for themselves, doubly so for someone with MS!

A Bitter Pill To Swallow: Gilenya (Fingolimod) death toll up to 11, FDA reviews drug.

For those of us with Multiple Sclerosis, Novartis’s fingolimod has been the first real pharmacologically approved option for a disease modifying drug that would allow us to stop either taking injections (with Copaxone, Rebif, Betaseron, or Avonex) or having a monthly infusion with Tysabri.

Now, I don’t know about you, but most folks don’t love needles. Gilenya was the hope of generations of MS patients to be able to simply take a pill for our condition. That’s why, when a patient died within the first 24 hours of their first dose of Gileyna, Novartis was reasonably concerned.

Both the European Union and the FDA are reviewing Gileyna (also known as Fingolimod). This doesn’t mean that it is going to be pulled from the market, or that the drug itself is bad! It just means they want to review it to ensure the safety of Europeans and Americans who have multiple sclerosis and who choose to take that medication.

This doesn’t mean the end for Gileyna. There were a number of deaths from PML that occurred before Tysabri was pulled from the market in 2005 and then reintroduced in 2006 with new safety precautions and a “risk-benefit” analysis.

Now, I don’t know about the “risk-benefit” analysis for any of my fellow MS sufferers. I can only speak for myself… but when death is on the line with your disease modifying drug, I personally believe that you’re messing with something far worse than your incredibly annoying and often painful disease.

To put it frankly: Multiple sclerosis itself is not fatal, so why would you take a drug that has proven itself fatal to others and very well might cause fatality in you?

I may not love giving myself a shot every night, but I can guarantee you that I will continue doing it until they create a pill or liquid that doesn’t kill folks — or until my symptoms disappear (and stay gone) thanks to the Paleo Diet.

That being said, I have plenty of friends online who would swear by their wonder-drug, and who are doing very well on Gileyna and are hopeful that the FDA simply says, “keep in good contact with your doctor.”

Whatever the outcome, my heart goes out to the families who have lost loved ones, and my hope is that the safety and care of those patients still living and on the drug are put ahead of Novartis’s profits, while real research is done.

Good health, everybody!