Posts Tagged ‘research’


Marching to a Different Drummer

October 23, 2009

When we named our son, we were told that his name in the Hebrew meant “to hear or be heard” with some connotation of hearing a different drummer.  I had no idea at the time how true that would be about him, both in his penchant for being heard and his marching to a slightly different drummer.  At the time, I just thought, “Cool, that’s the way I’ve always been, too!”   I didn’t even know back then how true that was going to be for me, either.  I was a healthy, first-time mom with nothing but hope for the future.

Honestly, maybe “marching” isn’t quite accurate in my case now, but I think the phrase applies anyway.  For this post I am going to write a different story about my experience with MS.  This story might be different from most of the stories you’ve heard, it’s different from most I’ve heard, and that’s why I want to tell it.  It’s not that I think my path is the right path for anyone other than me.  I share it because it might be a path that would be good for someone else and it is a path that is not often heard.  Almost daily I review my choices in comparison to what I read from other people, always wondering if where I am today would be different had I approached my healthcare, specifically the treatment of my MS, differently…most assuredly the result would have been different, but would it have been better?  Maybe so, maybe not, but I value the comparative process for its ability to give me some hindsight as I move forward every day, making new decisions with my doctor as to how we’ll proceed from here.

I have heard the stories of many, many MS patients from all over the world.  I really don’t know how representative of all MS patients they are, or how statistically accurate my perceptions are based on these stories, blog comments and posts, articles on information sites, entries on discussion sites, and stories in periodical magazines and papers.  What I can say is that among all the stories I’ve read and heard, I have seen some definite patterns among these patients.  Rarely do I read a story from a patient whose path sounds very much like mine.  Don’t get me wrong, my symptoms are very much like everyone else’s, each of us having our own particular collection but sharing the typical types of problems.  It is my treatment path that is so different from most I’ve read.  I wonder if there are others like me who just aren’t writing now, or if I really have had a different experience from most.

I am particularly interested in patients who have had MS as long as I have.  I have 20 years of history with this disease and 20 years of experience living with it, around it, and despite it.  I have learned a lot along the way and figured out a lot of coping strategies, but still I like to hear what other people have discovered works for them…I never know when something they do might work well for me, too.

Since we’re all a little different, let me start with a brief history of my version of MS in case you haven’t read all my previous posts.  If you have, then you can skip the next 5 or 6 paragraphs… 🙂

In November, 1989, I was walking along in the zoo with my husband, 2 kids and my father-in-law.  I was pushing my 8 month old in the stroller when suddenly I felt a feeling like a switch was tripped in my head that sent an electrical shock-like feeling traveling from my head down my right arm and right leg causing my right arm and leg to instantly become intensely tingly and the muscles rigid.  I was literally frozen in my tracks.   I called to my husband and he rushed over to where I was standing like a statue.  The spasm passed in a minute or two and he helped me to a nearby bench where we sat for some time until I felt like walking on to the car. 

Those spasms continued to happen frequently, spontaneously several times an hour and additionally, every time I moved, talked or laughed.  I felt a continuous and very disturbing buzzing sensation all over my body and very quickly my muscles became very sore from the repeated spasmic tensing.

When we went to the emergency room, the doctors did some blood tests and a physical exam but were stumped.  They gave me a prescription for a muscle relaxer and told me to find a neurologist.  The muscle relaxer, actually a central nervous system depressant, helped immediately to reduce the buzzing sensation and lessened but did not alleviate the spasms that were gripping my right side.  They reassured us that whatever it was, it was not life threatening and that I would be ok until we got in to see the neurologist.

We got in to see a neurologist a few days later.  He ordered an electro-encephalogram while the technician watched my spasm activity and marked on the read-out when each one happened…this gave him no useful information as the spasms did not show up on the EEG as anything unusual.  Other symptoms had appeared in the few days before I saw him, of which he took note in my medical record…slight slurring of my speech during the spasms, nystagmus in my eyes when really tired, extreme muscle weakness, dizziness and unsteadiness, an odd kind of nausea that was a kind of vertigo, an electrical shock sensation when I tipped my head downward (l’Hermitte’s symptom), uncoordinated gait during spasms due to inability to control the right side, tingling and numbness in extremities along with a general buzzing-like sensation everywhere except my head and a pattern of spasms happening whenever I attempted a movement…triggered by intention, the doctor said.  I was particularly puzzled by the stimulation of spasms if I laughed; I began to try not to, which was as unpleasant as all the rest of those symptoms.

The doctor saw the MRI I had a few years earlier for headaches and said it didn’t show anything he could use to diagnose the problem.  He and the radiologist who originally looked at the MRI when it was done both said there were white spots on my brain, but back then they didn’t know they were MS lesions!  He conducted a neuro exam and then announced that none of the tests were definitive and he would have to observe my condition over a period of several months to determine the diagnosis by differentiation from other diseases through observation. That was and sometimes still is the common way to diagnose MS and I am sure that many of you had that same frustrating answer if you were diagnosed back in the Stone Age.  He finally diagnosed MS a year later by which time I had already figured that out for myself just based on what I read during that year.  He didn’t call it Relapsing/Remitting MS for at least another year.

There were no available therapies for MS at that time, so I set about trying to figure out what helped and what made it worse. My different drummer was beating out the pace for me, I didn’t have time to dawdle, I had children to raise and a home to keep, and I couldn’t just sit there with a disease no one knew how to treat.  I started forcing my body to do what it didn’t do normally anymore and that helped a lot. It was 20 years before anyone confirmed with me that my thought, keeping the nerve pathways active in areas where they were messed up, was a good one…it just made sense to me and I saw it work over a period of time. Reducing saturated fat and increasing lean protein in my diet helped, too, it seemed to give me more strength and energy.  I learned the getting a lot of sleep every night was crucial to functioning as well as possible. I became very conscious of hygiene with everyone who stepped into our house once I realized that illness with fever completely debilitated me for a period of days. After that started, we were the healthiest family in town, no flu or cold or anything for years at a time!  All of these things still help and I continue to do them.

The symptoms that appeared in my first episode took a little more than a year to remit, but they did fully remit and I was symptom free, except for the buzzing, for 5 years. When I had my first relapse 5 years later, it was much milder than the original episode and it remitted in a couple of weeks, almost completely except for a little numbness in my toes and the ever present buzzing.  I still take the CNS depressant every day for that and I don’t really notice it anymore, it is sort of like background noise at this point.   I continued to be vigilant about rest, diet and hygiene. 

About 10 years after that relapse, my RRMS turned into Secondary Progressive MS.  I say about 10 years because this was a gradual transition, I began to have more symptoms that developed gradually and stayed instead of going away as they do in RRMS. I began to notice little changes, slight symptoms, at about that time but it was not real obvious what was going on.  I kept expecting it to be a prelude to an attack that never came.  I haven’t had what I would call a relapse, a full-blown attack, since changing to SPMS; it is more just a slow development of more symptoms. It is only in hindsight that I know approximately when that change occurred.  I had about 16 years of RRMS from that first episode that lasted a year and including that one serious but short relapse until the change to SPMS about four years ago.  The literature I’ve read says that it is common for that change to occur about 15 years after the initial diagnosis of RRMS, so I guess I was right on schedule, maybe for the first time ever!

When I heard about Betaseron and immune system modulating (suppressant) therapies like Copaxone coming onto the market in the early 1990s, I approached my doctor about them, asking questions and wanting to know his opinion about using them.   I will never forget his terse answer, “I don’t do those things with my patients.”  Ok, so back then they were new and experimental and to many doctors, unproven, I could accept that up to a point.  I went away and decided to look into the drugs anyway, finding as much info as I could back then, not having access to the internet.  I figured if I decided I wanted them I could always find another doctor. I eventually decided for myself, that I didn’t want to do the interferon because the side effects seemed terrible and it was something incompatible with having children and breastfeeding.  I’m glad I made that decision at that time.  When Copaxone came out a little later and my doctor still was not prescribing those things, I again investigated and thought that I didn’t want to suppress my entire immune system to prevent relapse of symptoms that didn’t seem that bad.  I could find no info about how taking it might impact having more children, but honestly, the immune suppression worried me more.  I began to evaluate every treatment that became available from a perspective of whether it made sense to me in the healthcare of my whole body, not just from the perspective of MS therapy.  I still maintain that conviction; that the health of my whole body is the goal, maximizing all systems together and not treating any part at the expense of any other part.  It has taken me 20 years to fully develop that whole plan and to put together a team of doctors who support me in that effort as well.

So here’s where I am now…I live on my own in a tall house with stairs…don’t laugh, those stairs are part of my physical therapy.  My kids are off at college now so I manage most things myself even if the pace I very slow. I go grocery shopping, drive myself to doctor appointments and to the gym for physical therapy. I do a two-hour physical therapy routine each week which tremendously helps my strength to walk and move.  I occasionally go out with friends and entertain in my home, which is a great pleasure for me. I have to rest often and schedule activities carefully to maximize available strength, but most of the time I can do what I need and want to do.  In the past few years, enzymatic digestive problems have been added to my set of symptoms, so I have begun to learn how to properly add dietary supplements to my diet to make sure my body has all it needs to stay healthy.  With the addition of those supplements, I saw an immediate reduction in digestive problems but even more impressive was the marked improvement in blood pressure, cholesterol readings, and arthritis symptoms.  Great!

My MS is now most focused in my left leg below the hip, with some tiny traces of muscle weakness in my other leg and in my hands when I have over exhausted myself. I am extremely heat sensitive and moderately cold sensitive so if I get stuck outside in the summer heat for more that a few moments, my whole body stops working and I have to sit somewhere cool and recover.  Fortunately, where I live it is not extremely cold or cold for very much of the year, so that problem is minimal.  I have never had optic neuritis or any eye symptoms except nystagmus in the early years after my first episode.  The skin over my toes and feet is pretty numb but underneath is not so I can feel what my feet are doing.    I rarely get sick with anything, but if I get a virus or something with a fever, I am totally debilitated and bedridden until the fever passes.

With SPMS, I have redeveloped an unbalanced, unsteadiness to my gait. Strengthening my “core” with physical therapy has helped with that a lot but still sometimes I stagger a bit, or suddenly turn in an unexpected direction. I have the ubiquitous fatigue as well, sometimes in my whole body and sometimes just in specific muscles…you know the kind I mean, not like your arm is tired from playing a set of tennis and not like you didn’t get enough sleep last night, but rather the tiredness down to your bones, like the energy has just been wrung out of those limbs completely and you can’t lift them at all.  Sometimes I get a little dizzy, too, and the balance is a little off.  That’s where the infamous Big Stick comes in; it helps a lot with balance and allows me to maintain good posture.  I have other auto immune diseases, too, thyroiditis, B12 deficiency, both controlled with medication, and arthritis which just is what it is….it has not been diagnosable so far as any particular type, it doesn’t fit any mold. My joints hurt and crack and stiffen up to a different drummer, too. 

All in all though, my basic systems are very healthy, especially for my age…good blood pressure, all organs functioning well, great cholesterol readings, good vision and hearing, good cardio-pulmonary functioning, and I’m hardly ever sick with the usual stuff that goes around, maybe once every 5 years.  At least I don’t have to worry about all this stuff; the bigger problems are enough. 

So enough about me; what difference have I noticed among my blog, Facebook, and gmail friends and acquaintances?  The most striking one is that almost everyone I’ve come to know or read about began a drug therapy regimen early on in the course of their disease, whereas I did not. 

Most people who write on my Facebook page or to my email account or comment on this blog talk at some point about the drug therapy regimen they are on.  They may extol the virtues and benefits of the drug their doctor has prescribed for them or they may bemoan the fact that everything they have tried has disappointed them or that they eventually had to stop taking the drug for one reason or another.   Right now everyone is talking about having the flu or colds or relapses while I am just glad to be getting some cooler weather!  I haven’t read stories from anyone who never took any immune modulating drugs of any kind, no Betaseron, no Copaxone, Avonex, Rebif, or any of the other drugs and therapies.  Where are the others like me? They must be out there somewhere!

Even though most patients with whom I communicate took the path of drug therapy and I did not, I don’t see much difference between where I’ve ended up after 5, 10, 15 or 20 years compared with all the people whose therapy stories I’ve read.  For the most part, everybody does well in the early years of RRMS, has relapses periodically, sometimes on the drug therapy, sometime when they go off.  I sometimes wonder if the relapses that happen when they get off the drug are a sort of rebound effect, maybe not; it’s just a thought.  But then I wonder about the relapses they get while on a drug that is supposed to prevent progression to some degree and wonder what that means.  I don’t know which group, on drugs, coming off drugs, or never on drugs, has more relapses or worse relapses; that would be an interesting statistic to see.  I do think I’m seeing them have more common illness than I do; maybe they have children bringing germs home from school or maybe they are not big hand washers like I am or maybe the immune suppressing drugs are allowing that. That’s something people have to weigh when considering whether to use a drug; what the side effects might be and what they are willing to tolerate.

All of this raises “what if” questions in my mind: What if I had started taken Betaseron or Copaxone when they first came out; would I be in a different condition now?  Would my MS be significantly different, better or worse?  Would my general health be better or worse than it is today?  What if they had chosen a path more like mine, how would their conditions be different today?  I’ve talked to people who began taking the drugs as soon as they appeared on the market and who are more debilitated  than I am now and others who seem in about the same condition as me.  Am I doing pretty well having no drug therapy all these years for reasons related to my own individual case of MS and how it progressed on it’s own, or did the choices I made contribute to that outcome?  I guess we’ll never have definitive answers to the “what ifs” no matter what scenario we talk about because with a disease like this one, there is no predictability of progression or outcome.  And I will always have “what ifs” popping into my mind…I think that comes with the different drummer, too.

It amazes me that I stumbled onto a path so different from everyone else and for almost 20 years it stayed that way.  Part of it was my doctor’s attitude that pushed me in that direction.  But I couldn’t just sit there watching my body destroy itself, I had to do something myself. Interestingly, I hear he has changed his ways with new patients though he never changed with me. When my symptoms started to change about 4 years ago, one of my other doctors mentioned a doctor she thought might be better for me at that point.  On her advice, I left the original doctor’s practice a year ago to join a more research oriented physician, only to find that not much has gone on in the development of therapies for SPMS.  Still, I am finding new ideas and new things to try with SPMS, some things are helping a lot, some not so much.  I am finding that maybe my drummer is even more important now that I have SPMS, to which the medical community has not paid much attention.

I’ve always marched to the beat of a different drummer, doing things differently from everyone else, being observant and trying things out for myself, listening to my doctors but making decisions based on what made sense to me.  That’s the right way for me and now I wonder whether the result of the path beat by my drummer is really so different from the more conventionally traveled path.  It’s hard to know really, but I do know this, my drummer’s path was and is most comfortable for me and has always felt right for me. In the end, that in itself is a very important part of good healthcare: doing what’s right for you and doing that with which you are comfortable.  I also really value how much I’ve learned on this path, having to consider all the options and making my own decisions at every fork in the road. It has given me some sense of control over this uncontrollable disease and I think that’s very important to maintaining a good state of mind.

For better or worse, this is my path, marching to a different drummer.