National MS Awareness Month || ANNIVERSARY: Preliminary Diagnosis

One year ago today, I got a call from my primary care physician telling me that he and the radiologist concurred, that they examined my enhanced MRI and both agreed that I had evidence of lesions on my brain consistent with MS.

Multiple Sclerosis.

I was at a coffee house waiting for my mother in law to be finished with her hair appointment. I was doing homework and had to go outside to take the call because it's a known bad cell zone there. I saw my doc's phone number on the caller ID and left all my stuff at the bar, including my Kindle and my wallet. I couldn't get out of that noisy bar fast enough to hear what he had to say.

I remember my voice being high-pitched and overly loud when I said, upon hearing the news:

"O-o-o...K-a-a-a-y..."

When I'm nervous I laugh or chuckle. I didn't do either. Instead, I took a deep breath and said, "Well, at least it's not a tumor and it's not Parkinson's."

Which the doctor happily confirmed.

Please note, this was the date of my preliminary diagnosis; I still needed to go in for further tests to confirm their findings, so while I was confident that my docs were accurate, I still had a little tiny thread of hope in there that they might be wrong. But those clarifying diagnostic tests were yet weeks away. So... How did I respond in the meantime?

Relief. Finally. An answer.

Denial. Okay, maybe the next, more intense tests will be more conclusive and maybe they were wrong about those white spots on my brain after all.

Fear. Crap! What does this mean? Crap! Crap! Crap!

Resentment. Why now? I just made a huge career change! Now what do I do? Was all this for nothing?

Examination. How long have I had these symptoms? What clusters of symptoms do I remember? What can I find out about MS now, and will scrying WebMD via Google make any of it go away? (No.)

Preparation. Hmmm, time to re-examination the diet, exercise, sleep and other health patterns I control to see how well I can fight back. Because I'm not going to take this lying down.

Sadness. I don't wish I was in a wheelchair, but I do wish people understood that my brain is not working right and I can no longer be 100 percent the person I used to be, which was all intellectual and clever and such. My brain is WHO I AM. My mind is now a steel trap with a lotta holes in it. And that makes me want to cry because I'm a writer and a thinker and a speaker and a teacher and I need my brain to not turn into a sponge because then, WHO WILL I BECOME?

Acceptance. Fine. I have friends with MS, and they are doing okay. I can't change this reality. I can help myself to feel better and to keep the disease from progressing, but I can't make things better by sitting around all day gazing at my navel. I am better off focusing on what's working and what's sustaining me in life, not on the possibilities of what bad things could happen. No reason to curl up into a ball and stop living. I have a great job, a mostly supportive family, amazing friends and, what's that? Remission? Yes, by gum, I think I might be in remission! Count your blessings, wouldja?

Yeah. I lost some sleep, my appetite. I cried. I laughed and made jokes about it. I read WAY TOO MUCH on the Internet. I talked to my friends with MS. I began to interpret every little odd physical feeling as a major symptom. There were days when anxiety built up inside me so much that I couldn't take a full deep breath without thinking I might explode. Always, there was the stinging reality that I could die, not from MS, but like an AIDS patient, from complications of the disease.

And I developed what I call "diagnosis brain," which is kind of like pregnancy or cancer brain... you develop a sudden, irreconcilable awareness that your body is now on a different, one-way journey and there's no going back to that old normal. Suddenly I'm walking around in a new normal, which is not normal at all, but foreign. Think Dorothy and the Wizard of Oz.

Better yet... Did you see Gravity? I felt like I was out in space when I got my diagnosis, like Sandra Bullock, hooked up to a suit, breathing, watching everything stable around me break apart, but still having some hope that there were still anchors out there for me to latch on to. I just had to use everything in my possession to figure out how to do that, while not knowing about what other surprises lay in wait for me (good and bad).

I'm still not sure even this truly captures what it feels like to have diagnosis brain. I'm happy to say that I mostly don't have diagnosis brain a year later. And I'll talk more about that another time.

I'll end this passage saying just this: I am grateful it only took a couple of months to go from preliminary diagnosis to confirmed differential diagnosis. I have friends who are still trying to figure out what is wrong with them. Autoimmune disorders are like that: insidious mimics which are hard to capture in tests. I have two dear friends walking that path right now, and I ache for them, because at least my pathway from the old normal to the new normal was finite. That untethered, out-in-space feeling of limbo is nothing I care to endure again any time soon.

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.