National MS Awareness Month || Root Causes

The reason there's no cure for MS is that, while researchers understand how it happens--it's a specific immune system response which attacks the central nervous system--they don't know what can trigger it. The result is that they can only guess at how to treat it, and must rely on dual approaches--treating the symptoms separately while also finding ways to halt or slow its progression. Research has been ongoing for decades in terms of both cures and vaccinations to prevent it, but until they can isolate its root causes, those of us with MS are still going to be guinea pigs, either at the hands of the medical/pharmaceutical community or at the hands of the alternative medicine community.

Basically there are four areas where MS is examined in search of etiology, or disease origin. 

Immunology
There's a lot of agreement here, that multiple sclerosis is a disorder of the immune system. Which makes sense. It's a war between a hyperactive immune system and the body's central nervous system. 

Genetics
There are multiple genetic connections which are still being identified and understood, but this is more in the range of protein triggers and not genetic inheritance. One twin who gets MS does not mean the second twin has a high chance of also getting MS; the odds are nominal (3% chance, compared to 1% chance in the general population). 

Environment
It seems likely that MSers are suffering due to exposures to certain kinds of elements in our environment, as statistics continue to bear out how MSers respond to certain toxins relative to their geographic location. 

Infectious disease
Studies show a likely connection between MSers and exposures to certain kinds of viral infections.

There are also certain risk factors (to be clear: these are not causes, in and of themselves) that lend themselves to the "perfect storm" belying an MS diagnosis. These include people who are:

1. Of Northern European descent
2. In the age range of 20-40
3. Female
4. Already diagnosed with other autoimmune disorders (i.e. arthritis, Celiac disease, etc.) 

If one or more of these risk factors occurs in a person, the odds seem to go up that they could be at greater risk for developing MS. 

Here are the most popular theories about what could actually trigger MS in an otherwise healthy person. These potential root causes are the most discussed among patients, doctors and researchers. 

1. Exposure to some (still yet to identify) environmental agent before puberty 
2. Vitamin D deficiency
3. Lack of sunlight exposure due to geography
4. Smoking (first- or second-hand)
5. Exposure to either the human herpes virus-6 or the Epstein-Barr virus, especially early in life
6. Family history (see text above regarding genetic predisposition)

Still in the research phase are a few other potential theories getting some attention:

1. Exposure to radon and ionizing radiation
2. Exposure to acrolein, an environmental pollutant
3. Exposure to Epsilon toxin, produced by certain strains of Clostridium perfringens. This spore-forming bacterium is a frequent cause of foodborne illness in the United States
4. The presence of an unusual comorbidity known as Chronic Cerebrospinal Venous Insufficiency (CCSVI), a (controversial and unproven) condition in which blood drains abnormally from the brain and spinal cord
5. Root canal procedures (which always present the potential to damage the inferior alveolar nerve), which may make it possible for certain bacteria left behind post-surgery to enter the brain, leading to MS (sorry, no link here as I can't find any studies that can be accessed by the general population without a subscription).


Disproved theories about potential root causes of MS should be included in this discussion as they are still out there, circulating in the general population. If anyone ever tells you that any of these are at fault, please find a friendly way to educate them! 

1. Viruses carried by household pets
2. Allergies, in general
3. Heavy metal exposure (though this is controversial, still)
4. Physical trauma
5. Aspartame
6. Gluten intolerance
7. Antibiotic use
8. Fluoride

MS is not only mysterious, it's political 
Please remember to help support MS research whenever you can. The clinicians can never work fast enough toward the cure, but there are literally thousands of studies out there that are pointing to real possibilities, and they need your support via awareness and funding. 

I know many people with MS or who have loved ones with MS who are at the end of their patience waiting for a cure, and many of them have stopped believing that medical science is even interested in finding a cure. Not true! Research continues to require the astronomical expense of lots of broad test populations, major safety considerations and the latest in technology to complete studies on root cause as well as to test the viability of medications that might stop MS in its tracks. 

If you're American, you also have the added curse of an UNDERFUNDED medical research community reliant on pharmaceutical companies to pay for it all. If we, as citizens, would enact more legislation that supports more government funding, we might be able to take the presumed steering wheel out of the biased hands of Big Pharma and place it back into the hands of modern scientists who really do want to cure this disabling disease.

CLICK HERE TO DONATE TO THE National Multiple Sclerosis Society







Blog post sources:
What Causes MS? || National Multiple Sclerosis Society
Multiple Sclerosis: Risk Factors || Mayo Clinic

National MS Awareness Month || Welcome to my craters! A quick neurobiology lesson in MS basics

Well, these aren't MY craters, but they did once belong to someone with multiple sclerosis.

The craters are evidence of the war between one's hyperactive immune system and its target enemy, the central nervous system. As this interior neurochemical warfare takes place inside one's body, the damage takes the form of lesions (or plaques), shredded nerve fibers that, over time, turn into atrophied sections of the brain. Craters.

Also, if you can imagine the coating on a copper wire being damaged, revealing the copper filament inside, then you have an image of the physical proof of the demyelinating process. Demyelination occurs when the outer coatings of our nerves (the myelin sheaths) are eroded away by aggressive immune system attacks, leaving these openings or scars in the coatings. This makes the nerves themselves dysfunction partially or completely.

The reason why those with MS have so many different variations on the disease resides specifically in where these lesions form. If one gets lesions on nerves that operate the bladder, for instance, then the are going to have bladder issues. If one has a problem with word recall and speech? The lesions are probably located in the speech center of their brain.

How are lesions found? MRIs locate active ones as "white spots" when gadolinium contrast dye is injected into the bloodstream during the procedure. An MSer can have active lesions (which are likely the source of their various physical woes) or they can have inactive lesions (basically, scabbed over areas of demyelination). Inactive lesions might be thought of as previously active lesions in remission, with no active inflammation occurring in those areas. A new, actively inflammatory lesion might be detectable for almost 2 months, then develop scar tissue, thereby turning it into an inactive lesion. Here's a great article that really explains the whole active-inactive lesions difference in great detail.

If you've ever wondered why doctors have MSers take annual or even quarterly MRIs, it's because they are tracking the active inflammation in the brain, especially if the MSer is taking a disease modifying therapy (or DMT). These snapshots help to capture the develop of MS "over space and time," which is critical in confirming diagnosis.

The brain does have some capacity to remyelinate, if given the chance. This is why doctors want their patients to be compliant with their DMTs... the theory is that the DMTs will slow the attacks enough that the brain can get in there and work some healing magic. There are drugs currently being examined in large studies in Europe which may effectively arm the brain with this remyelinating magic, which, though not a cure, promises to be a great weapon for any MSer battling the disease. Think of it as filling potholes... not exactly a cure, but usually a serviceable fix.

Some ways to help alleviate the symptoms that are the result of these attacks are more or less good health practices for anybody: eating a healthy diet low in inflammatory foods, exercising, taking supplements that may assist with reducing systemic inflammation, getting enough sleep, drinking water, treating other inflammatory comorbidities like arthritis. These efforts are not going to cure MS or even stop its progression, but they can help relieve symptoms and assist the brain in gearing up to do its healing work when opportunities present themselves during periods of remission (when lesions grow inactive).

Pissed off in quarantine

So I pick up my MIL from the nursing home and take her to the hair salon. This is 10 days ago. Then a few days later she (without telling anybody) has diarrhea. Like many elderly people (and yes, I am qualified to say this!), she puts off doing anything about it and thinks it will just go away, she doesn't want to be a bother to anyone. A few days later she is in the hospital with dehydration. Then, a few days later, I'm hit by a repeat visit with my arch nemesis, norovirus.

Norovirus is most commonly known as the driving pestilence among cruise ships. What people don't seem to know is that it is also practically epidemic in nursing homes. What people also don't know is that for someone with a compromised immune system, it takes the body nearly two weeks to shed norovirus from their bowel. Whee. For everyone else, it's two to three days.

Now I have norovirus and I'm holed up in my home, missing at least 3 days of work (more than $1000, probably more, will be gone from my paycheck, just like that, as I work per diem) and I'm frickin' miserable.

Most people think of me as the positive attitude MSer, but when I get sick because of something like norovirus, I get exceedingly cranky. Why wouldn't I be? I am already taking DMDs which give me gastrointestinal distress to some degree. Now I have heaped on top of that a ridiculously spastic colon. Plus the cilia lining my intestine are burning up. Plus my digestive system from the top of my stomach to my rectum aches like a sumbitch (like one big tender bruise). Plus I have no appetite. Plus I have a sour metallic taste in my mouth. And you should hear the way liquids rush through my pipes, like a noisy water slide, ending with me burping up something that smells like rotten eggs. What this all means is that I will be spending the next couple of days chasing bouts of explosive diarrhea with Gatorade and decaffeinated tea.

Oh sure, I could be glib and say that was the easiest 5-10 pounds I ever lost overnight, but that doesn't make me feel any better about the realities.

How does norovirus happen in nursing homes? Elderly people have incontinence issues and they don't necessarily wash their hands. Food service workers in nursing homes come to work with viruses they may or may not even know they have, and they don't necessarily wash their hands. Healthcare workers come to work with viruses they may or may not even know they have, and they don't necessarily wash their hands.

Why don't all you people frickin' wash your hands???????? Ack. This is why I'm pissed off. Because if you all just washed your frickin' hands and stayed out of the public sphere while you were sick, I wouldn't be bedridden right now.

I must say, I am a compulsive handwasher. My job in the medical field requires it of me, as does having MS. I can't afford to contract diseases like norovirus. My wallet can't and my brain can't. As soon as I got home from my trip Sunday night, with a burgeoning case of norovirus already making its presence known by all the side trips made to roadside gas station johns, what did I do? I washed my hands and put on gloves. My whole family has already suffered through this misery once, I don't want to repeat that particular example of living hell.

Unfortunately, compulsive handwashing is not the reality for many healthcare workers, which is why it's a repetitive message posted in clinic and hospital washrooms, from November through April especially: WASH YOUR HANDS! But people forget to think, because they don't feel poorly. Or they imagine they aren't at risk for infecting anybody else.

Well, guess what?

You can carry norovirus and never have symptoms. Lurve-ly.

Now my parasthesias are back after months of being gone. Not good. That means my brain is having a problem fighting off attacks from viral proteins even as I write this. More work for my DMDs to do to get me back on what I thought was a forward movement toward some healing.

I could get into a whole thing about health literacy right now, how only 12% of our entire population (including ALMOST ALL OF you smart educated people) don't know sh&t about your own healthcare world, but I'll save that for when I have a more positive frame of mind.

I could also get into a discussion about the latest trend, in which some people gleefully point out that we don't need doctors, we just need water, exercise, fruits and vegetables and fresh air. Really? Really? So this MS I have, and now its concurrent noroviral companion, which is right now shredding the myelin sheathing off of my axons and eating holes into my gray and white matter... these are all my fault because I haven't just treated myself with water, exercise, fruits and vegetables and fresh air? Really?

No, I'm sick right now because a/Who Knows Why? MS has environmental and genetic components, but that is all they can really say about its cause, and b/I visited the nursing home of my MIL which, unbeknownst to me, is crawling with norovirus.

NOT MY FAULT.

That's all I can write for now... I'm too pissed off.

Relief by flush... not necessarily a contradiction in terms

One intriguing side effect of the medication I'm taking (Tecfidera) is something called "flushing." This is more or less the same side effect I would get from taking Niaspan, a high-dose version of niacin (vitamin B3) often prescribed as an "old school" treatment for high cholesterol. 

Flushing consists of an intense itching that takes place just under the skin (very similar to allergic itching) and a companion reddening of the face and/or neck and/or chest. For me, the flushing mostly impacted me at the ears; the insides of my ears would get extremely itchy and my ear lobes and pinna would turn a deep red and feel warm to the touch. 

I took Niaspan for years and it was extremely helpful in lowering my cholesterol. I also took an extremely high dose (2000mg) which did not seem to bother my liver. At bedtime, I would take this dose with four baby low-dose aspirin, which help to attenuate some of the discomfort of flushing. I learned to ignore the side effect mostly and to simply tolerate it. Apparently I'm more tolerant than most, as I've heard horror stories from people who have tried Niaspan; interestingly, their tales of misery correspond almost too neatly with the same horror stories spun from others who are taking (or had to stop taking) Tecfidera due to intolerance issues.

Tecfidera, it turns out, does pretty much the same thing to me in terms of flushing, except that it makes my whole face red (actually, from the chin up, I turn magenta; from my chin down, I'm my normal sallow olive-skinned self) and the itching tends to spread to other extremities. Still, it's not usually too bad and maybe just once a month do I actually notice it. Since I take this medication not only at night (when I can sleep through this side effect) but also in the morning, I am always concerned I will be struck with flushing at an inopportune time. By and large, that hasn't happened. Once in a while, I might feel it coming on, but in the last six or so months, I think I've really only noticed it a total of six times (maybe more, but it wasn't extreme enough to be memorable).

I had an afternoon of flushing the other night, which surprised me with its severity. Luckily I was in a movie theater where nobody could see me. Then, the next night, it happened again and I even thought about taking Benadryl to counter the effect (which eventually I did when I went to bed as I was also having some congestion issues). 

I decided the next day to look into the mechanics of flushing. Is it a bad thing for someone with MS? A good thing? What exactly do Niaspan and Tecfidera have in common that leads them both to achieve this similar side effect? But first things first: What is actually happening to the body during "flushing?" 

Biology 101

Remember, there are arteries and capillaries. Arteries are the large vessels which carry lots of blood away from the heart at a very fast rate to all major sectors of the body, while capillaries distribute the blood (in smaller amounts, more slowly) from these main arteries to the body's nooks and crannies. Sometimes, the bottleneck of blood supply transferring from the arteries to the capillaries leads to inadequate blood flow, leaving some toxins to remain in the cells rather than be washed away by blood factors necessary for healing. 

However, if you dilate the blood vessels  (technically, vasodilation), they relax and expand to allow more blood to stream through and bring healing blood products to the cells. The cells can then flush out any resident toxins. The itchy warmth that occurs is caused by newly oxygenated blood flushing into the capillaries close to the skin as well as by the actual process of dilation that occurs in the blood vessels.

Dilating the capillaries can happen as a natural occurrence (as in an immune system response where histamines are released into the blood stream to deal with inflammation), or it can happen with some pharmacological help. Niacin's signatory impact on the body is through vasodilation. By opening up blood vessels, cholesterol in the body can be processed and moved without sticking to the walls of the vascular system and creating plaques that lead to chronic disease later.

It appears that Tecfidera activates a similar kind of flushing response in either the vascular system or fibers of the autonomic nervous system (or maybe both?), though researchers really can't explain how or why as of yet. I did learn that these ANS nerve fibers serve the sweat glands, which can lead to an effect called "wet flushing" (much like a hot flash, but not related to the female hormone, FSH), which is not the same as the "dry flushing" that occurs via vasodilation from products like niacin (see Nasr, Cleveland Clinic).

What's interesting to me is that I learned in my research that, between 1946 and 1959, thousands of MS patients were treated with a central nervous system vasodilator in a kind of therapy called "relief by flush." Apparently, histamine vasodilation proved to offer many MS sufferers relief from acute "flares" and virtually every kind of symptom (see Ganesh & Stahnisch, 2013). Inconsistency in research, the death of the leading researcher, Hinton Jonez, and the distraction of new drug research seemed to pull attention away from these findings. 

Lately, however, there has been a return to the notion of niacin as a potential remedy for MS after controversial treatments for chronic cerebrospinal venous insufficiency (CCSVI) began to make headlines in the mid 2000s. Though the jury is still out on the efficacy of "liberation therapy" for CCSVI, vitamin B3 has been resurrected as a potential helper and even shown in separate studies to offer "dramatic protection" against early stages of multiple sclerosis (Rhodes, Haacke & Moore, 2011).

Why this is relevant to MSers

Well... last fall, I stopped taking Niaspan. I was having some pretty serious "wet flushing" and, at age 48, I asked my PCP if he could check to see if I was in early menopause. I had a blood test, stopped taking my birth control pill for a month to see what would happen. Nothing changed, I still had the sweats, and the blood test came back negative. Then I stopped taking Niaspan to rule it out as the source behind my nighttime flushing. I continued to have it (and still do, though not all the time). Clearly the culprit is Tecfidera.

But what about the Niaspan? I completely forgot until recently that I wasn't taking it (with its companion baby aspirin) and now I wonder if my cholesterol has grown elevated without it. Hmm. One of my worst symptoms of MS has to be this underattention to detail that is not typical for me. I hate forgetting, making careless omissions. I think this oversight is one of them, and I hope I won't regret it later.

I'll be seeing my doc again later this month for annual tests and will be curious to get back my cholesterol results. But in the meantime, I think it's safe for me to go ahead and reintroduce the Niaspan, 1000mg at a time this week, bumping it back up to 2000mg next week. It seemed to be working for me before, and by the looks of things, all that flushing action it contributes to might end up being the perfect companion to my Tecfidera treatment.

And now, when I hear others complaining about the flushing side effect of Tec, I can offer them a glimmer of hope, that maybe the itching and redness and internal flushing is just proof it's doing its job, that there really might be some legitimate "relief by flush."

(Or maybe not. The jaded GenXer in me has discovered that many of my MS contemporaries seem more happy to wallow in their discomfort and complain rather than find a solution. Positive spirits like me just come in and ruin their day! LOL).

All I can say is that I feel very lucky to be able to tolerate the flushing I get from either drug. 

At any rate, stay tuned...

Citations & further reading

Brickner, RM. "Phenomenon of relief by flush in multiple sclerosis; its use as a foundation for therapy." AMA Arch Neurol Psychiatry. 1955 Feb;73(2):232-40. DOI:10.1001/archneurpsyc.1955.02330080110020

Denoon, DJ. "Vitamin B3 May Help MS." 2006. WebMD Health News. See: http://www.webmd.com/multiple-sclerosis/news/20060919/vitamin-b3-may-help-ms

Nasr, C. "Flushing." (n.d.) Cleveland Clinic Center for Continued Education. See: http://www.clevelandclinicmeded.com/medicalpubs/diseasemanagement/endocrinology/flushing/

Ganesh & Stahnisch. "On the Historical Succession of Vessel-Based Therapies in the Treatment of Multiple Sclerosis." 2013. Eur Neuro 2013;70:48–58. DOI:10.1159/000348780

Rhodes, MA; Haacke EM, Moore EA. CCSVI as the Cause of Multiple Sclerosis: The Science Behind the Controversial Theory. McFarland Health Topics: 2011. ISBN-13: 978-0786460380. Amazon link

Stimson, D. "Vitamin B3 Points Toward New Strategy for Treating MS" 2007. National Institute of Neurological Disorders and Stroke. See: http://www.ninds.nih.gov/news_and_events/news_articles/news_article_MS_B3.htm