How?

Given my tendencies towards intense introspection, I find it hard not to dwell on the “why’s” of my disease. Primary among these why’s is “why me?”, a question infused with self-pity that I know is best left unprovoked. I could quite easily drive myself half mad trying to figure all of the angles involved in this ultimately unanswerable query. If I’d made some different decisions in the past, might some alternate life path have avoided the Multiple Sclerosis landmine? Or would all roads eventually lead to Rome?

When I have allowed myself to stray down this tangled trail, a nasty battle always breaks out between my Buddhist and existential leanings, my inner Siddhartha calmly stating that there is no such thing as coincidence while my inner Jean-Paul Sartre screams back that life is nothing but an exercise in randomness. Nothing like a philosophical brouhaha roiling around inside the noggin to ruin what might have otherwise been a decent day. In the end, these thought kerfuffles inevitably lead me to counter the “why me?” conundrum with its other half, “why not me?”. This seems to temporarily satisfy both Siddhartha and Sartre, forcing them each to retreat back to their own little corners of my mind, where the Buddha sits in quiet meditation and Sartre drinks and smokes his brains out.

I have of late been giving more thought to the “how’s” of my illness, as in “how the frack did I get so sick!?!?”. Whereas the “why” question deals more with the metaphysics of the situation, the “how” is focused more on the nuts and bolts of the disease mechanism and the circumstances that led to my getting ground-up in its gears. At first glance the “how” might seem as insoluble a question as the “why”, but by sizing up what we know about the disease and matching it with the circumstances of my own life I think I’ve come up with a reasonably plausible explanation for how I got from point A to point B (and the B stands for “Blechh”).

It’s long been suspected that Multiple Sclerosis and other so-called autoimmune diseases have strong genetic components. As scientists have begun to unravel the human genome, more and more genes have been discovered that seem to play a role in the Multiple Sclerosis disease process (click here and here). While many patients might not be able to isolate their own genetic susceptibility without a complete mapping of their DNA, in my case the genetic connection is actually quite clear.

My mom developed gestational diabetes when she was pregnant with me, and unlike the vast majority of such cases, her illness did not resolve after I was born. Stranger still, her malady turned out to be type I diabetes, otherwise known as juvenile diabetes, by far the most serious form of the disease. Type I diabetes is thought to be caused by an autoimmune attack on the pancreas, leaving it unable to produce insulin. A shake of my mom’s family tree revealed that her grandfather and uncle also had type I diabetes, indicating that there is certainly a genetic trait for the disease being passed down from generation to generation. Research has shown that the children of diabetics have a 50% greater chance than the general population of developing some sort of autoimmune disease, and here I am with not only MS but also Hashimoto’s thyroiditis, an autoimmune disease that destroys the thyroid gland. It is also suspected that I’ve had an autoimmune attack on my pituitary gland, and for a while the doctors thought I had discoid lupus, an autoimmune disease that attacks the skin.

Of course, simply having the genetic predisposition to develop a disease doesn’t on its own guarantee that a person will get sick. Given my family history, it’s likely that many of my relatives share these same funky genes, and none of them, to my knowledge, have developed diabetes, Multiple Sclerosis, or any of the other usual suspects (lupus, rheumatoid arthritis, Crohn’s disease, etc.). Somewhere along the line something needs to trigger the genetic susceptibility for disease to take hold, in effect turning the “sick genes” on. In the case of MS, scientists have long focused on the Epstein-Barr virus (EBV), a member of the herpes virus family, as a likely disease trigger.

Epstein-Barr virus is the nasty bug responsible for mononucleosis, although most people infected with EBV never do develop Mono. Instead, the initial infection can manifest as a severe cold or flu, and a person can often be infected without having any symptoms at all. Once infected with EBV, the virus stays within a patient’s body for the rest of their lives. Infection with Epstein-Barr virus is so common that it’s estimated about 90% of the adult population harbors the virus. Astoundingly, though, it’s been found that 100% of MS patients are infected with EBV. That’s right, 100%. The correlation is so high that some researchers have stated that “people who are not infected with Epstein-Barr virus do not get MS” (click here).

Sure enough, blood tests have revealed that I am indeed infected with EBV. Of course, since the vast majority of adults are also infected with Epstein-Barr virus, the virus alone can’t be the cause of Multiple Sclerosis. In conjunction with a genetic susceptibility, though, the virus may be the thing that tips the scales between health and illness.

It’s interesting to note that in its dormant state, Epstein-Barr virus takes up residence within the immune system’s B cells. Just so happens that some of the MS disease modifying drugs destroy a patient’s B cells, thereby ridding the body of much of its EBV load as well. The interferon drugs (Rebif, Avonex, Betaseron, Plegridy) also happen to be very strong antivirals. Could it be that these drugs work, at least in part, not because of their immunosuppressive or immunomodulating properties, as is commonly believed, but because they are attacking EBV in the bodies of MS patients? Not a mainstream idea to be sure, but something I think worth considering.

Epstein-Barr virus isn’t the only infectious agent that has been linked to MS. The bacteria responsible for many sinus infections have been implicated in the disease as well (click here and here). I’ve suffered from sinus infections most of my life and had endoscopic sinus surgery in 2006 to try to eradicate the problem. Unfortunately, the surgery only helped temporarily, as my sinus problems reemerged soon afterwards. So I’m two for two when it comes to possible infectious triggers for Multiple Sclerosis.

Actually, make that three for three. Exposure to toxic molds and funguses have also been linked to neurologic and demyelinating diseases (click here), and back in the 1990s, when I was living in South Florida, I spent two years working in a building that was found to be riddled with toxic molds and bacteria. At the time I was employed by a startup company, and after a few months working in their very crowded offices the company moved into a larger building that had been empty for quite some time. The facility was in pretty bad shape, with wires dangling out of the decrepit ceiling panels and a musty smell hanging in the air. Simply walking into the place felt unhealthy.

After spending about a year and a half working within those walls it was revealed that upper management had been sitting on an environmental report which stated that the building was riddled with a smorgasbord of toxic microorganisms. The sons of bitches in the executive offices had kept the report hidden until one of their administrative assistants copied it and left it on the desks of several employees. Soon after, men in hazmat suits came and sectioned off parts of the building as they decontaminated the place section by section. In retrospect, my first weird symptoms started cropping up while I worked in that building, and last year when I was tested for exposure to toxic molds the results came back positive. Wonderful.

Stress is another factor that has been linked to MS and similar diseases. Many MS patients report their first symptoms after periods of acute stress, and it’s been demonstrated that stress can bring on relapses in those patients suffering from Relapsing Remitting Multiple Sclerosis (click here). Though I’d always been neurotic and prone to worry, my years in South Florida were especially filled with stress, both of the acute type brought on by upsetting life events, and long-term simmering stress engendered by living in a place where I always felt like a stranger in a strange land.

My periods of acute stress were almost always initiated by the breakup of romantic relationships, which I inevitably took much harder than was even remotely reasonable. Losing a long-term girlfriend more often than not sent me into a period of prolonged psychological agony, during which I’d lose weight, sleep, and sense of self for months and months at a time. Yes, I know it’s hard to believe that any woman would leave a fella as oozing with charm as me, but lo and behold, there were a few who unceremoniously gave me the gate. And when they did, I imploded. Seems I had an incredible knack for zeroing in on precisely the women who would be most toxic to me and then fall for them, hard. I believe the accepted psychological term for a person who habitually engages in such behavior is “jackass”.

Soon after one breakup in 1997 I suffered from incredibly severe headaches for about three weeks, super intense searing headaches that emanated from the base of my skull and left me damn near completely debilitated. Now my MRI images reveal my one big juicy MS lesion at the very top of my spine right beneath my brainstem, precisely at the spot from which those headaches seemed to radiate. Could it be that those headaches of old were somehow involved in the formation of the lesion that is at the root of my current neurological mess?

The latter five or six years of my stay in South Florida found me enmeshed in a kind of simmering, low-level stress brought on by trying to be someone I wasn’t. I spent that time working in extremely corporate environments, shirt and tie type places that I found to be soul stifling. Though I had creative jobs within those organizations, the stress of trying to conform with corporate culture took its toll. I had once sworn I would never join the 9-to-5 workaday world, but there I was, sending myself off to prison each and every day.

Though I made several very close friends in Florida and was never wanting for a social life, I always felt somewhat alien there, my aesthetics and values simply at odds with the place and most of its inhabitants. Still, for reasons I can’t fully explain, I remained living in a place I couldn’t stand while working at jobs I hated until one final romantic breakup mercifully sent me packing back to New York, where I rediscovered the me that I’d almost forgotten existed. And then, just a few years later, the beast that had been showing glimpses of itself for years finally reared its ugly head, and I was diagnosed with MS.

There then is the “how” of my disease, as best as I can figure. Genetic predisposition? Check. Exposure to infectious triggers? Check. Periods of stress, both acute and long-term? Check. Now, if only there was some way to uncheck some of those boxes. Researchers are just starting to try to figure out how to address the genetic aspects of disease, and many biotech startups are attempting to develop gene therapies for a variety of illnesses. Scientists are working on vaccines for Epstein-Barr virus, but the work still seems to be in its early stages (click here). And though life will never be free of stress, individuals can learn techniques such as mindfulness and meditation that can help them make better life choices and reduce the impact of stress on their existence.

I wish I could say that figuring out how I got sick brings with it some sort of gratification. I suppose that on a purely intellectual level fitting the puzzle pieces together into a somewhat coherent picture is a teensy weensy bit satisfying. Then again, all of my conjecture may be completely wrong, my illness due more to the evil eye put on me by a Gypsy beggar I once crossed than to the elements identified by my keen analytical powers. Perhaps it was my destiny to wind up the Wheelchair Kamikaze, and no matter what choices I made, all roads would’ve converged at point B (as in B, for “Barf”). Okay, I’d better stop this thought train before Siddhartha and Sartre square off and pelt each other with rocks and garbage in the deepest recesses of my brain pan…

This article was originally published on Marc’s website on 09/22/16 and is being featured on MultipleSclerosis.net with his permission.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (8)
  • JustsayN
    2 years ago

    Hi I have MS and believe I was predisposed to it even as a child.. I believe I check all three of your boxes. My MS came on me around 42 but I was noticing symptoms in my 30’s. My mother died the day I was born. I really don’t know much about her heath conditions, although she died from a cerebral hemorrhage, I was the weaker twin (she doesn’t have it). First box checked.

    My early childhood was riddled with mysterious nosebleeds. In high school I know I was exposed to Epstein Barr even though I never has Mono. Check box #2.

    Finally I endured about 10 years in my twenties and early thirties of horrendously stressful work environment. I mean sleepless nights and alcohol abuse. Check box three.

    Have not really spent time thinking about this stuff in a while. I try to limit stress as it is the one box over which I have any control at this time. Thanks for sharing.

  • Julie
    2 years ago

    When I shook out my family tree, I was specifically looking for MS. Nothing on either side of my parents family showed any. None. But when I looked deeper, I found things like “neurological illness” or “illness of a neurologic sort”. It was as if they couldn’t find, or didn’t have a name for whatever was wrong with the patient. This was all on my father’s side.

    Yet, since my DX 15 years ago I have had a cousin on my mom’s side that was also DX’d. I’m not alone anymore! So who knows what the genetic component is that makes up our bodies. Since being DX’d I have also developed psoriasis, after looking it up found it is also auto-immune. Also reading that if you have one auto-immune problem you are prone to develop more. Aren’t we lucky!?!

    I’ve given up on “why”. It’s worn me out trying to figure out where this all came from and why I was the only one in my family to develop so many autoimmune problems. I don’t know what to do with the information I’ve found with my family when old records are so vague about the illnesses.

    It’s enough that I make it thru the day, the week, the month, and year on my own 2 feet, for the most part. It’s interesting info though and I don’t think researchers do enough to investigate this side of it. I wish everyone well and in good health as possible.

  • Azjackie
    2 years ago

    I often think why me? Why am I tortured? I think for me it was stress.

    A car accident hit by a drunk driver at noon. Compound leg fracture, crushed ankle, broken wrist, and three ribs over my heart. After learning to walk again, a couple years break, two business mergers losing my job both, and lastlly losing my health AZMedicaid insurance.

    Then I think it could be genetic. My Father when born suffered spinal menengitis. He also shared with me psoriasis.

    Who knows? I just stress now that a cure will not be found because drug manufacturers and doctors would stop earning money.

  • Marc Stecker-Wheelchair Kamikaze author
    2 years ago

    Stress definitely plays a big part in many diseases. Science is shown that intense stress can play havoc with any number of our body’s systems, and the immune system is especially susceptible.

    As for your concern about profits over cures, I think they are well grounded. Unfortunately, the deeper I dig into the workings of the medical industrial complex, the more confounded I become. Turning chronic illnesses into multibillion-dollar businesses has made many people very rich, but treating rather than curing leaves patients in the lurch. Better off than having no treatments, but still…

  • potter
    2 years ago

    I just came to the realization that I have Multiple Autoimmune Syndrome. When I was in my 20’s I would lose patches of pigment on my skin. My doctor said I had the skin problem that Michael Jackson had (Vililigo) but didn’t have it bad enough to worry about. I have always hads small spots of psorrias but it has gotten worse lately. On my mothers side of the family I have had 10 die of ALS and 2 from MS. I think it genetic for me, I was raised on vegetables my parents grew, very little meat or bread. You can research on-line and find the theories that researchers and doctors have. Or you can quit pulling your hair out and realize that shit happens. The last thing to do is ask “Why not me”. Potter

  • Marc Stecker-Wheelchair Kamikaze author
    2 years ago

    Yes, I too have Multiple Autoimmune Syndrome. Lots of endocrine dysfunction, and at one point they thought I had a form of lupus.

    Genetics definitely plays a role. My mom is a type I diabetic, and children of type I diabetics have a 50% greater chance of developing some autoimmune disease.

    Shit does indeed happen. I endeavor to stay mindful, and not dwell on questions without answers, but MS doesn’t wind up leaving you with lots of time to fill. And, as I’ve always been prone to introspection, it seems that Inevitably that time gets filled with thoughts that perhaps should not be pondered. Need to start my meditation practice going full bore again…

    Thanks for the comment…

  • Dimitri
    2 years ago

    It’s bizarre how not only do people with MS experience the disease differently, but our reaction to having the disease can vary as well. I attend a MS support group and the “WHY me” question comes up a lot. It’s interesting that I’m not preoccupied by that question, because the other members in the support group tell me that I must be in denial. They say that if I’m not angry then I haven’t come to terms with the diagnosis. My diagnosis is only about 1.5 years old but I’ve been feeling like crap for at least 12 years.

    I do harbour some unanswered questions though. The big question that keeps going through my mind is “When did this begin?”. That one just kills me. It’s like, how could I have been so out of touch with my body that I didn’t pick up on some sort of problem.

  • Marc Stecker-Wheelchair Kamikaze author
    2 years ago

    Yes, MS does effect people differently, both physically and mentally. Why me, why not me, and questions of that ilk have no real answers, of course.

    I suspect that answers like “how” and “when did this begin” do have answers, but they are almost impossible to ascertain. Like you, I had been feeling pretty bad for several years before my actual diagnosis, which came after I finally developed a limp I could no longer ignore in my right leg. Previously, I could talk all of my other symptoms up to imagination or some other benign physical manifestation.

    As for your “when did this begin”, I guess it’s easy for me to say stop beating yourself up over it. The symptoms of MS tend to creep up on patients, until they finally become to obvious to ignore. I think it would be almost impossible for somebody to be so in touch with their body that they would be able to pick up on those super subtle first signs…

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