Changes, Inside And Out

Change (Photo credit: mbgrigby)

For many individuals, change is an unpleasant proposition. Most folks generally strive to maintain stability in their personal and professional lives. Major life changes, such as switching jobs, suffering the breakup of a romantic relationship, or moving to a new location can cause tremendous amounts of anxiety and stress, and studies have shown that some major life events, such as divorce, can have a lasting negative effect on mental and physical health. The simple fact is, though, that a certain amount of change is inevitable, and quite often changes once feared turn out, in retrospect, to have been for the better.

Once, while working for a large corporation, I attended a three day symposium that focused entirely on how to deal with change from a business point of view. Since change is inescapable, the symposium leaders told us, rather than fearing and trying to avoid it, workers and organizations are much better served by anticipating and embracing the shifting circumstances that are sure to come. Sticking rigidly to the tried-and-true will sooner or later find a business, no matter how large or successful, facing an existential crisis.

Patients dealing with progressively disabling diseases like Multiple Sclerosis are often forced to navigate lives riddled with change. Some of these changes, the physical, are often abundantly obvious to the outside world. Others, the changes that occur within, which are necessitated by the patient’s need to cope with their changing physical circumstances, are often only perceived by the patient themselves, or those closest to them.

From the moment of diagnosis, change becomes a constant way of life for the stricken, and the uncertainties associated with a disabling disease only serve to amplify the anxieties felt by the patients suffering from it. The physicians call MS a heterogeneous disease, meaning that it can present quite differently from patient to patient. Be that as it may, no matter how the disease presents itself physically, psychologically all patients share a fear of the physical destruction that can be wrought by the disease, and the resulting life changes that may be forced upon them.

I can quite clearly remember the haze of confusion that engulfed me in the days and weeks following my diagnosis, a sense of befuddlement heightened by the fact that the simple act of diagnosis had forced a sudden, irrevocable change in my reality, a permanent alteration to my sense of self. Although my symptoms at that point were largely invisible, I knew that I now stood apart from the crowd, that the so-called problems that I grappled with pre-diagnosis were dwarfed by a larger one that lurked within me, one that had the potential to change my life in ways that were almost too terrible to contemplate.

Though my knowledge of MS at that time was quite limited, I knew from the moment of my diagnosis forward that my life would never be the same. Even as I vowed to fight the disease with everything I had, and consciously told myself that this hurdle needn’t be an insurmountable wall, the research I was obsessively doing to educate myself didn’t paint quite so confident a picture. Yes, many patients were able to fend off significant disability for years and sometimes even decades, but others found themselves caught in the jaws of an insatiable monster, their lives twisted in ways they once thought impossible. Deep inside I knew that waves of changes were coming; it was just a matter of how destructive they would be and how fast they would crash ashore.

Indeed, my life now, just about 10 years later, bears little resemblance to the one I lived on the day I first noticed my right knee buckling ever so slightly with every step I took. A snapshot of my existence taken just before my diagnosis compared to one taken at this very instant would reveal changes so dramatic as to be almost surreal. The path from then to now is paved with incremental changes, each following a logical progression, but as I travel down that path the sum total of those changes seems anything but logical.

Through conscious effort I’ve managed to find a measure of solace and sometimes even contentment despite the effects of the disease, but not a day goes by that I don’t find myself at least once experiencing a terrific moment of shock at the toll the disease has thus far exacted. And then the knowledge that further changes are surely coming briefly crystallizes and compounds that shock, like a sudden chill stabbing through a drafty window frame, until with effort I force myself back into the relative safety of present. There is no getting used to the situation, rather, one learns to live with it largely because there is simply no other choice..

The physical changes inflicted by my disease (which now may or may not be MS, depending on which doctor you ask) that impact my day-to-day existence result from a toxic brew of symptoms. Muscle weakness, spasticity, fatigue, and a storm of other symptoms subtle and possibly nameless combine to grip me in their own diabolical custom-made vise. The progressive nature of the illness makes mentally coming to terms with any current state of disability a difficult proposition, since without some form of intervention it’s almost certain that more losses are to come.

Some patients are fortunate in this regard, and their disease plateaus at a certain point, stabilizing their state of disability, at least for a while. My disability, though, has thus far shown itself to be a constantly moving target. Trying to throw a psychological net around it so that it can be assimilated into at least a semi-permanent sense of self has proven to be an exercise in futility, like attempting to collect soap bubbles momentarily floating through the air. Change, then, has become a constant, and my life over these last 10 years can be charted by the mental and physical adjustments made to accommodate an ever transforming new normal.

Starting at day one and plotting my course to the present, walking with a limp progressed to walking with an ankle brace, and then to walking with a cane, as the distances I was able to travel grew ever shorter. Soon after came a power wheelchair, at first only used outside of my apartment, but eventually inside as well, much to the chagrin of my apartment’s walls, doorframes, and certain pieces of furniture. Walking is now reserved for the few clumsy and increasingly difficult steps between my chair and the bed, or my chair and my computer, or my chair and wherever else my chair can’t quite reach.

Of course, mobility issues are only part of the physical damage done by the disease. These myriad physical changes have made necessary alterations to my very definition of who I am and the qualities with which I define myself, as the disease methodically stripped away layer after layer of the superficialities that, over time, I had come to believe were the building blocks of “me”. The impermanence of what once seemed to be the foundational elements of my life speaks loudly of the tenuous fragility of what most consider their reality. In fact, the only permanence I can now count on is change, and living life in a state of constant physical flux requires ongoing psychological adaptation as well.

Unlike the changes to my physical self, which have been decidedly negative, many of the psychological changes that I’ve undergone have been surprisingly positive. I’ve certainly gained a sense of perspective, as many of the problems that vexed the healthy me have been revealed to be mere trivialities. Since the disease itself appears to delight at taking whacks at me, I’ve compensated by trying to be easier on myself, though self-criticism sometimes still does get the best of me. I’ve gained a tremendous amount of empathy for the downtrodden, victims not only of disease but also of circumstance, especially if those circumstances are not of their own doing.

Above all, I’ve learned the immense value of striving to stay rooted in the present, as the now, this very moment, is all we ever truly possess. The past is but a collection of memories filtered through a veil of years, and the future a place populated, courtesy of the disease, by some potentially very real monsters. Even if the now isn’t ideal, you do yourself a tremendous disservice by not attempting to fully occupy every moment. Far more than platinum, gold, or diamonds, time is the most precious of commodities, as it is irreplaceable and grows scarcer with each passing second. Used properly, the past is a tool that can best inform us how to make the most of the present, but it’s so very easy when faced with a present that is wrought with hardship to instead use the past has a sanctuary, attempting to blot out what is with memories of what was.

Though this may provide some temporary and sometimes much-needed comfort, ultimately one must find the resolve to seek the nugget of good that always hides somewhere in the present, even if finding it requires digging through layer after layer of psychological and spiritual pain. For each of us the composition of that glimmer of good might be quite different, but reason to hope, I think, is an essential ingredient. Once this labor is done, and the nugget of good uncovered, it must be held tightly and nurtured, and carried through the next moment, and then the moment after that.

Change is never easy, and the sea of change engendered by a crippling disease can be especially cruel. It can be tremendously difficult to not get caught in its currents and dragged under, and often the more one struggles the tighter gets the grip of its tides. Rather than wasting precious energy fighting the pull of the roiling ocean within, practicing kindness to self and making some effort to accept what is allows one to let go and float along the crests of the turbulent waves of distress, instead of fruitlessly struggling while being pulled under by them. This can be the key to finding respite amidst a raging storm, and ultimately making your way to calmer waters.

Attempting action through inaction is of course easier said than done, especially when the changes are coming hard and fast and it seems that there is no time to even take a breath, but taking charge of the raging elements within to create your own internal reality is the only way I know to soothe the savage psychological goblins of progressive illness. We must never stop fighting the disease, but in order to properly do so we must consciously give up the fight we sometimes wage against ourselves, and focus our efforts instead on the very real beast at hand.

A Potentially Effective Treatment for Progressive MS: Hiding in Plain Sight?

Methotrexate (Photo credit: Wikipedia)

While all of the varieties of Multiple Sclerosis are vile, especially troublesome are the progressive flavors of the disease. Over the last two decades, strides have been made in understanding and treating Relapsing Remitting MS, the most common form of the illness. While the available treatments for RRMS are far from universally effective, don’t address the still unknown root cause of the disease, and some carry with them downright frightening side effect profiles, they do significantly improve the quality of life for many of the patients taking them. No such strides have been made in the fight against progressive MS. Patients suffering from Secondary Progressive MS (SPMS) or Primary Progressive Multiple Sclerosis (PPMS) are left with few if any treatment options, and their care often amounts to nothing more than aggressive attempts at symptom management. The reasons for this are many, including the relatively small patient population, and the difficulty in designing cost-effective treatment trials with readily measurable endpoints.

Given the confusion regarding the subtypes of MS that I see on Internet forums, it seems that a quick rundown of the subtypes may be in order. Relapsing Remitting Multiple Sclerosis, RRMS, is marked by distinct disease relapses, during which a patient suffers a significant onset of symptoms, followed by periods of remission, when those symptoms subside and the patient returns to their former physical state, albeit sometimes with additional accumulated disability. After a period of years, the disease of many RRMS patients transitions into Secondary Progressive Multiple Sclerosis, SPMS, at which point they stop having relapses and remissions, and instead suffer a steady accumulation of symptoms. Primary Progressive Multiple Sclerosis, PPMS, is much like SPMS, in that patients experience a steady increase in symptoms and disability, without the peaks and valleys that signify RRMS. The difference between SPMS and PPMS is that, by definition, all SPMS patients must have had RRMS first, whereas PPMS patients experience progressive illness from the onset of their disease. If a patient has ever experienced relapses and remissions then they cannot have PPMS. If such patients find themselves, over time, suffering from a strictly progressive course of the disease, they would fall into the SPMS category. As mentioned above, both SPMS and PPMS, though distinct subtypes of the disease, unfortunately share the same lack of effective treatment options.

There is, though, one treatment, called intrathecal methotrexate, that has shown promise in limited real-world implementation when used to treat progressive MS, both in anecdotal patient reports and retrospective studies conducted by the one MS clinic that makes extensive use of the treatment. Unfortunately, most MS neurologists are unaware of the potential benefits of intrathecal methotrexate for progressive MS patients, and many who are aware of the protocol are often too dubious of the treatment to give it serious consideration.

The intrathecal methotrexate treatment protocol involves injecting the drug methotrexate directly into the spinal fluid of progressive MS patients, via a lumbar puncture. The treatment is typically given every eight weeks, using a very thin needle to inject the medication into the lumbar region of the spine. While many patients may be understandably queasy about the prospect of having a lumbar puncture every eight weeks, when done by experienced medical personnel the procedure should cause minimal discomfort with few side effects. When weighed against the insidious nature of progressive MS left untreated, periodic lumbar punctures, as unsavory a prospect they may be, certainly are preferable to an inexorable slide towards significant disability.

Used extensively by the International Multiple Sclerosis Treatment Center of New York (where I am a patient), the use of intrathecal methotrexate has been shown to be widely effective in limited studies published by the clinic’s researchers and practicing physicians, led by Dr. Saud Sadiq. In one such study of 121 patients, disability scores were found to be stable or improved in 89% of SPMS patients and 82% of PPMS patients one year after their last treatment (click here). A longer-term study (click here) found that 48% of patients experienced no increase in disability after treatment periods ranging from 3 to 6 years. As noted, both studies looked at small patient populations, and did not include a placebo group for comparison, but their findings do offer some intriguing evidence of the efficacy of this treatment in a notoriously hard to treat group of patients. It is thought that intrathecal methotrexate, which has known anti-inflammatory properties, also may inhibit the progression of MS by interacting with astrocytes, cells that are associated with the formation of MS lesions (click here).

When given orally or intravenously, methotrexate’s side effects are typical of many chemotherapy drugs, and include hair loss and nausea. In the tiny doses used in intrathecal injections, though, the side effects are negligible. I experienced absolutely no side effects from the treatment, and neither has any patient I’ve met have has also undergone the protocol.

In my time under Dr. Sadiq’s care (since 2004), I have tried the treatment on two occasions, totaling eight intrathecal injections of methotrexate. Unfortunately, the treatment did me no benefit, but I am a very poor example upon which to base any opinions, since my disease is highly atypical, if it is even MS at all (click here). Another popular MS blogger, my good friend Mitch, who writes the terrific MS blog “Enjoying the Ride”, suffers from classic PPMS, and recently happily announced that after five spinal injections of methotrexate, the progression of his disease has slowed to a trickle, and may have even stopped (click here for all of Mitch's methotrexate posts). As documented in his blog, Mitch had to do a bit of heavy lifting to get his neurologist to agree to treat him with intrathecal methotrexate, but he eventually got his neurologist to agree after providing him with research documentation linked to in the above paragraph. Mitch's experiences with the treatment haven't always been easy, but have been well worth it if indeed the progression of his illness has been beneficially impacted.

Why has the use of intrathecal methotrexate for the treatment of progressive MS not been studied more extensively? You’d think that a treatment as potentially effective as this would attract researchers and pharmaceutical companies like flies to honey. Unfortunately, the sad truth is that it all comes down to money. Methotrexate is a very old drug (click here), first developed in the 1950s to treat certain forms of leukemia. It has since been shown to be effective in treating other kinds of cancer, as well as lupus and a variety of other autoimmune diseases. It was granted FDA approval for use in treating rheumatoid arthritis in 1988. Because the drug is so old, any patents held on it have long since expired, and it’s available as a cheap generic compound. In the extremely small doses used to treat MS intrathecally, each shot costs about five dollars. Therefore, there is very little profit to be derived from marketing methotrexate, and so it receives no attention from the pharmaceutical companies, which at this point fund the vast majority of medical research conducted in the USA. Many other potentially effective treatments, such as low dose naltrexone (LDN), also fall into this same trap, left largely untested and unheralded simply because facilitating robust trials would not be cost-effective. Forget about patient well-being, the financial bottom line has become THE bottom line in medicine as it is now practiced, oftentimes to the detriment of the very people the system supposedly exists to benefit. When patients are viewed first as consumers, something is very wrong.

Based on what I know about this treatment, I’d suggest that any patient with progressive MS at least discuss intrathecal methotrexate with their MS neurologist. Be prepared for pushback. As noted previously, most neuros are reticent to try this approach. This is where the importance of patient education and self advocacy comes in. When talking to your doctor, bring back up materials, such as printouts of the research linked to in this post, and some of Mitch’s blog entries from Enjoying the Ride. With other treatment options limited if not nonexistent, and the long-term prognosis of those suffering from progressive multiple sclerosis so daunting, all options need to be put on the table.

Although having a chemotherapy drug injected directly into the spinal fluid may sound a bit radical, when broken down to its individual bits the protocol really isn’t all that scary. Methotrexate has been used safely and effectively for decades, and in the tiny doses used in this protocol presents very little risk. Lumbar punctures, while no joyride, are routine for most neurologists, and the use of very fine needles minimizes the chance of postprocedure complications. Many neurologists are willing to try the new generation of powerful immunosuppressant drugs now used to treat RRMS on their progressive patients, with no proof whatsoever of their efficacy in treating the progressive forms of MS. Given the potentially dire consequences of leaving progressive MS untreated, shouldn’t a potential therapy that has already helped hundreds of patients be given serious consideration, regardless of its "outside the box" designation?

On the day of my diagnosis, I vowed that if this disease was going to take me down, I was going to go down swinging, both fists battered and bloodied, all guns blazing. Progressive MS (or whatever it is that I’ve got) isn’t very likely to show much mercy, and as a guy who grew up on the streets of New York City I know that when faced with such an adversary, all bets are off. You do what you have to do, throw any rules right out the window, and meet fire with fire. Like it or not, this is mortal combat, and if getting a spike in the back every couple of months provides even the slightest chance of beating this thing back, I was, and am, willing to take it. Treatment with intrathecal methotrexate did not work for me, but it has worked for some, and that alone should give all engaged in the struggle reason enough to give it serious consideration. Talk to your doctor, and pay close attention to their advice, but always remember that in the fight against your disease, the doctor-patient relationship should not be a dictatorship, but a partnership. Treatment with intrathecal methotrexate may be unconventional, but, as it stands now, the conventional modality for treating progressive MS has been nothing but an abject failure. Hopefully, with ongoing research, this situation will turn, but in the meantime I say self educate, agitate, and take an active role in mapping the attack on your illness.