MS and hot cocoa

Hey, did you read the article that hot cocoa made with high-flavonoid chocolate could ease MS fatigue? I have MS fatigue. I like cocoa. This sounds like a recipe for an informal experiment!
 
The headline of the article I read is Daily Cup of Flavonoid-rich Cocoa May Help Ease MS Fatigue. It details a small trial of 40 MSers, half daily drinking high-flavonoid cocoa made with rice-milk and half drinking low-flavonoid cocoa. (Was the choice of rice-milk just a nod to food allergies?)
 
Fatigue was measured by a quality-of-life self-report, and fatigability was measured by a six-minute walk test (i.e., how far could a user walk in six minutes).
 
The trial concluded that the high-flavonoid cocoa was not only linked to heart and gut health but may “improve fatigue and fatigability” in MS.
 
What is a Flavanoid?
 
They are a type of plant-based antioxidant that occurs naturally in fruits, vegetables, wine, and tea, and are responsible for the vivid colors found in produce, for example. Studies have suggested that flavonoids have anti-inflammatory and neuroprotective benefits.
 
One place they are found is in cocoa beans. Usually the cacao tree produces the beans that are then roasted and ground into a paste called the cocoa solids. 
 
Thus, cocoa solids are a good source of flavonoids and the percentage of solids in the product should be listed on the side of a package. You can use this number as a general guide for choosing chocolate made with the highest concentration of solids. 
 
Unsweetened cocoa powder has 88 to 96 percent cocoa solids, for example. Dark chocolate contains 45 to 80 percent, and milk chocolate has only 5 to 7 percent, as the solids are “watered down” with sugar and milk. White chocolate doesn’t contain any.
 
(Was low-flavonoid cocoa achieved by replacing solids with “artificial flavors”?)
 
What about Heat?
 
As cozy as a cup of hot dark chocolate cocoa before bed sounds, it probably isn’t the optimal way to get your flavonoids. According to researchers, boiling causes the highest loss of antioxidants in vegetables, for example.
 
The length of time you expose foods to heat can significantly impact the antioxidant content. 
 
And imagine the roasting process by which the cocoa bean is converted to a cocoa solid. Although roasting is considered a “dry cooking method” and one of the best ways to retain nutrients, it may be reducing antioxident content by as much as 60%.
 
This shouldn’t matter much to us, as the cocoa we buy in the stores has the solids number on the label. But then again, researchers have discovered in some studies that the labeled cocoa content of the chocolate did not always reflect analyzed levels of flavonoids. Sigh.
 
Bottom line
 
This was a small study; more research is needed of course. But it seems like a thing that would definitely qualify for a go.fund.me effort. Hot cocoa is pretty much universally liked.
 
If you don’t like dark-chocolate cocoa, a square from a dark chocolate bar upon waking seems like it would help. If you want a higher flavonoid count, try making your own cocoa with unsweetened cocoa powder.
 
Maybe it is just a quality-of-life thing. Having a cup of cocoa every day makes you happy. We deserve that. 
 
And even if you only drink milk-chocolate cocoa, as long as there are some solids in it, you are getting a few flavonoids. 🙂
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Troublesome Tysabri

In 2004, a new MS drug was approved by the FDA. As opposed to an interferon, Tysabri (natalizumab) is “a monoclonal antibody”.  For more explanation, try this.
 
It blocks white blood cells from binding to molecules which want to drag them into the brain where they would cause inflammation.
 
As an aside, at this point, all the MS meds aim to reduce inflammation in the brain. This is a primary goal. Symptom management. Because we STILL don’t know what causes the disease. Ergo we still can’t say any of them “works” beyond their ability to reduce inflammation in some brains.
 
In healthy (read ‘non-treated’) people this process is desired. It happens when the body is fighting an infection. Without this process, those on it are more susceptible to infection. The body is without one of its tools.
 
Just a year after it was approved, my neuro switched me. 
 
My First Infusion
 
When I began Tysabri I was cautiously optimistic. It was a big deal: a new drug administered by monthly infusion as opposed to those icky (to me) daily shots. So I went for my first infusion on Thur., 2/24/2005.
 
At this point, I needed to walk with a cane, I was experiencing some rapid loss of energy daily (fatigue) and had a bout of double vision. But the infusion went fine, and I was hopeful I’d see improvement soon.
 
I had just moved in with my boyfriend. So the next morning we watched the news together in horror: scrolling across the bottom of the screen was a notice that Tysabri had been taken off the market because several subjects of its latest study had died!
 
The fallen test subjects had developed a severe brain infection, called Progressive Multifocal Leukoencephalopathy (PML). 
 
PML
 
It is described as “a viral disease characterized by progressive damage (-pathy) or inflammation of the white matter (leuko-) of the brain (-encephalo-) at multiple locations (multifocal).”
 
We now know that PML is caused by the JC virus, something we all already carry, but is usually kept in check by a healthy immune system, something we MSers don’t have. 
 
Other risk factors include duration of therapy and presence of the anti-JC virus antibodies. 
 
If they aren’t already triggered, these antibodies might appear after time on Tysabri, for example. This is what doctors are looking for every six months; it’s a “marker”–not that the individual definitively has PML, but that they are more likely to get it.
 
My Second Infusion
 
Eventually the drug was brought back to market, based on the reasoning that its benefits were greater than the risk. And in 2011, my neuro tried me on it again.
 
And again, the first infusion went fine. I had regressed to using a wheelchair to get around and I was tele-commuting full-time from home. Again I felt cautiously optimistic.
 
The next month I was sitting next to another MSer and she was saying how great she was doing on the drug. I nodded and smiled, hoping for the same.  
 
Suddenly she looked at me oddly and said “You’re starting to break out in hives. I can see it on your face! Aren’t you itchy?”
 
The nurse rushed over and discontinued the infusion right away. As she pumped me full of Benadryl and Solumedrol, she told me that I was now hypersensitive to Tysabri. That ruled it out for me ever again.
 
I admit I was disappointed. 
 
This is on the 2019 Safety Information: “Patients who receive TYSABRI for a short exposure (1 to 2 infusions) followed by an extended period without treatment are at higher risk of developing anti-natalizumab antibodies and/or hypersensitivity reactions on re-exposure”
 
Helpful tip: Know the medicines you take. Keep a list of them to show your healthcare provider and pharmacist whenever you get a new medicine.
 
Other stuff

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“I’m melting! melting!”

The first time I experienced M.S. fatigue, I was living on the Peninsula in the S.F. Bay Area.  It was exhaustion like I'd never known.  I remember trying to fold my clean laundry in a laundromat and having to stop and rest after one or two pieces at a time.  

My arms felt like lead, my legs felt like they were shuffling through quicksand and my brain was so, so foggy.  And sleeping didn't help although getting out of bed each morning was a battle.  The exacerbation lasted a few weeks.

As with all my symptoms, it seems that once I've had it for the first time, the subsequent times I get it don't seem as severe.  In reality, I suspect that they are as severe but that I become desensitized to them.  Or maybe it's just never as scary ever after.

In any case, I think I am in the throes of an exacerbation, and the current heat wave isn't helping.

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