Friday, August 28, 2009
Tuesday, August 25, 2009
I continued the daily Copaxone injections for almost six months. Then one morning I read online (is there any other way to get the news) that the Copaxone trial for PPMS had been cut short due to poor results. I thought to myself, "Just because the drug failed to meet certain statistical criteria doesn't mean that I'm giving up on it. I’ll stop taking it if and when I determine that it is not working for me. I’m sticking to the plan that my doctor and I came up with." I loaded the syringe into the autoinjector and lifted my shirt so that I could inject into my belly. According to my spreadsheet it was a belly day. Those were the worst.
For some unexplained reason the autoinjector simply would not discharge. Was it the spring mechanism? Was the syringe not correctly loaded? No, the problem was in my head. I was hesitating…
Up until that very moment I was completely committed to the course that my doctor and I had set to try Copaxone for a year, as I had with Novantrone, before making an assessment of its effectiveness. But the news of the failed trial, coupled with the ever so slight hesitation I experienced before pulling the trigger on this shot, initiated a chain of neurons firing in my brain, resulting in an instantaneous and irreversible decision. This was impetuous Mitch, making one of his rare appearances. In about 2 seconds I went from committed to this drug to done with this drug, that minute, forever. Did I mention that I hated those shots?
I need to pause here and address Copaxone in more general terms. Many folks take Copaxone shots every day and are either tougher than I was or simply don’t feel the discomfort that I did. Copaxone is improving the lives of people with RRMS. It is the most popular FDA approved disease modifying treatment for MS. If you are considering Copaxone, please don’t give too much credence to this one account of the injection site reactions. But if you do choose Copaxone, and it does feel like a bee sting every day, then because you read this post maybe you won’t feel like everybody fed you a fairytale. And one more point, if I had to endure a shot that feels like a bee sting each day to make my MS better, or even stable, I’d do that in a second. I just couldn’t do it when it became apparent that Copaxone wasn’t working for me, or for other people like me.
My first two treatment attempts, Novantrone and Copaxone, were big time, FDA approved, expensive, intrusive treatments. Although they were not indicated for my type of MS, they were very legitimate attempts. After these two failures I began to move into the more fringe treatments- drugs that had only anecdotal evidence of controlling MS at all, let alone PPMS.
My neurologist and I always have what we refer to as an “on-deck” treatment. This is the treatment that, once the current treatment fails, will be the next treatment we’ll select for failure. While I was taking Copaxone the on-deck treatment was Methotrexate, which is a mild chemotherapy agent or potent immunosuppressant drug (you choose) used successfully for Rheumatoid Arthritis, and administered orally- yes, a pill. No IV bags. No needles. No autoinjectors. Oh boy!
Forgive me, because I’m about to commit the storyteller’s ultimate faux pas. Instead of building slowly toward the exciting climax of the Methotrexate story, I’m going to jump ahead by a year and reveal the ending right now. If this will just ruin the fun for you, and you don’t want to know the results in advance, then this would be a good time to cover your mind’s ear, so you can’t hear your mind’s voice read the next sentence. ***The Methotrexate didn’t work*** OK, for those of you who plugged your mind’s ear, it is safe to listen again. I revealed this ending because the more interesting things about the next year in my MS life are not so much related to the drugs that I took, but to the changes going on with my body. Year two was the first year of significant, noticeable disease progression.
I took my first Methotrexate pill on December 8, 2002. That was 1 year and 47 days after my diagnosis. I kept an MS Journal, and still do. In my journal I noted that in this first year (plus) after official diagnosis, my leg weakness had slowly progressed. Although I was a regular at the local gym, I was no longer able to do strength training in my lower body. I noted in my journal that there had been zero impact to my upper body. Upper body weight training was unaffected. Kayaking was unaffected, etc.
My job as a design engineering project manager required me to spend significant time walking around our clients’ plants and job sites, all over the country. By the end of that first year I could no longer wander around these sprawling factories at will, although if I was clever about it I could still make a couple of tours each day and accomplish the rest of what I needed to by studying photographs and drawings, and by relying on the observations of others. I was compensating quite effectively for my slight lack of mobility. My job performance had not yet suffered.
So the first year’s events were mostly related to diagnosis and aggressive treatment attempts. The degree to which MS had affected my day to day activities was relatively minor. If I hadn’t chosen to disclose my MS diagnosis to you at that time, then you wouldn’t have known anything was wrong, yet.
Saturday, August 22, 2009
An Easy Way for People with MS to Get Involved (healthy readers may just want to skip over this one)
If you have MS there are lots of ways to help out. You can participate in a clinical trial. You can join a support group. You can start an MS Blog :-) . But perhaps the easiest way for you to engage in the effort to find a cure is to join the registry for the North American Research Committee on Multiple Sclerosis (NARCOMS). If you are not yet a member of the registry I hope you’ll give it a good look. I’ve been a participant for, heck, I can’t remember how many years. Your only obligation is to fill out an online survey about your experiences with MS once per quarter. I’m convinced that the information is kept completely confidential. It takes about 10 minutes to fill out.
From the NARCOMS website:
“The purpose of the Registry is to speed the development of new therapies and healthcare services by facilitating research in these areas and reducing the time and cost of research studies. Individuals with Multiple Sclerosis are invited to enroll in the Registry through direct mailings, MS centers, support groups, and the NARCOMS Registry webpage. Enrollment involves filling out a questionnaire and mailing it or submitting it online to the Registry Administration Office. Participants are assured that strict confidentiality will be maintained and that their names will not be given to anyone without their permission. The questions asked are regarding demographic information, MS-related medical history, immunologic and symptomatic therapies, health care services used, and a series of patient-assessed performance scales that reflect disability in eight domains of function.
Benefits of Participation
· You are helping to provide the information needed to learn about the variations of MS in a very large group of patients and to monitor the progression of the disease
· You help us monitor the effects of various treatments. Your information may be providing ideas for future research
· You will be receiving the printed version of the MSQR free of charge (note from Mitch: this is an outstanding publication)
· You will be informed of recent studies and their results
· You will be notified of clinical trials in which you may be eligible to participate”
Click here to sign up.
Wednesday, August 19, 2009
At the dosage I was prescribed Novantrone, I thankfully did not suffer the classic chemotherapy side effects. I kept all my hair and had no problems with nausea. Novantrone was dispensed as an IV drip, once every three months. It only took a few hours to administer, so I would get the treatment in the morning and go to work in the afternoon.
One interesting characteristic of Novantrone is its deep blue color. When I was about halfway through with my first infusion of the stuff, I needed to use the restroom. Imagine my surprise just prior to flushing when I looked down into the bowl, and instead of the customary yellow color I saw a toilet bowl that appeared as if it had Sani-Flush cleaner in it. I laughed out loud. People outside the restroom probably wondered about me.
I don’t want to compare what I am going through to what cancer patients experience. But, I knew I was in the big leagues when the person to my left was talking to the person to my right about where exactly they stood in the complex process of getting their affairs in order, and they were speaking about this as casually as one would talk to a friend about whether he had filed his tax return yet, or whether he was the type of person who would procrastinate until April 15th. Could the cancer patients tell that I was not one of them because of my rosy red cheeks and full head of hair (well except for that thinning area on the very top)? In later years, when I entered the infusion room in my scooter or wheelchair, did the cancer patients wonder if I had that all too common “leg cancer”, and were they then secretly but errantly thankful that their cancer was not as advanced as mine?
Although I had very few noticeable side effects from Novantrone, I did not take it without some risk. Too much Novantrone affects your heart's ability to pump blood. So everyone has a maximum lifetime dosage of Novantrone that they can take. When I was taking Novantrone the protocol required a full cardiac checkup before starting on the treatment. Today you need a full cardiac checkup before each infusion. I don’t mean to scare anyone away. If you need Novantrone to slow down your worsening MS, I think it is a very reasonable risk to take.
My reaction to the first three doses was very mild. It did not affect my daily activities at all. In fact, after my second treatment I went on a 225 mile snowmobile ride the very next day (I really miss snowmobiling by the way). However, after the fourth treatment I did feel quite fatigued for a number of days. I never took a fifth dose because my physician and I concluded that the disease was progressing in such a manner that the Novantrone was probably not having any positive effect on me. Such was my first attempt at controlling multiple sclerosis. It was quite disappointing that our aggressive gamble at slowing down this disease before it ever really got going was a complete failure. I had been very optimistic that this approach was going to pay off. We had played our trump card early in the game. We had shot our silver bullet and had missed the target.
A few months after learning I had MS, almost midway through my year of Novantrone treatments, I felt the need to get a second opinion about my diagnosis and treatment. I met a friend whose doctor in Boston was a world renowned MS expert. I was able to get a few minutes one day with the guru himself. He confirmed my diagnosis of Primary Progressive Multiple Sclerosis, and suggested that I try his drug of choice called Copaxone. Both Novantrone and Copaxone were being trialed as possible treatments for PPMS. Both trials eventually failed, as have all PPMS trials to date.
Copaxone is administered by the patient as a self injection, once per day. So while I was still getting Novantrone treatments I added this second very powerful and very expensive (but covered by insurance) treatment regimen. There were two other injectable drugs available at the time. The advantage of Copaxone over these drugs was that it did not have any flu-like side effects, as the other two options did. The drawback with Copaxone was that it required a daily injection, whereas the other two drugs were an every-other-day injection and a once-a-week injection.
So I got my Copaxone kit including pre-filled syringes and autoinjector device that did the dirty work for you. I loaded the syringe into the autoinjector, selected a spot on my thigh, and pushed the button. I must tell you that all the literature that I read and patient reports that I had received on the internet made Copaxone sound like a piece of cake compared to the other two injectable drugs. I was sorely, emphasis on the word sorely, disappointed. It felt like a giant bee sting. The injection site was often bruised any number of colors for a few days. Frankly, I felt betrayed by the medical community and by my fellow MSers. Either nobody had mentioned the discomfort that came with the shots or I was wearing rose colored glasses when researching Copaxone. I’ve learned since that this is a hit or miss thing. Many folks feel very little discomfort and a few of us feel significant discomfort (I’ve been hanging around doctors too much- referring to pain as discomfort). I built a detailed spreadsheet for tracking my infusions, with date, location on my body where I injected, and how the injection felt. Despite the pain associated with Copaxone injections, I was again optimistic that this treatment would slow down the stubborn disease.
Sunday, August 16, 2009
Even though people are generally very considerate, I thought it might be helpful for me to provide some pointers about interacting with disabled people when you meet them in public (or at least if the disabled person you meet is me):
- If you've read my earlier posts you know that I have a high-tech wheelchair. If you'd like to know how it works, and I'm not in a big hurry for some reason, I'll probably tell you everything I know about it. However, I would appreciate it if you don't cause a scene. Please don't yell out in the middle of a busy shopping mall, "Earl! Earl! Get over here! You've got to see this! This chair is the freakiest thing I’ve ever seen!" This really happened to me last week.
- If you are so inclined, feel free to offer me assistance with tasks. However, if I say "that's okay, I have the door" then please don't open the door for me anyway and just get in my way and turn what was going to be a slick maneuver into a pileup in the doorway. In many situations I wholeheartedly welcome offers of assistance like this. So please don't take the other extreme and assume that any offer of assistance will be considered some sort of insult. My advice is to offer assistance if it feels right, but be prepared to step away if your offer is kindly refused.
- Personally, I find it okay if you ask me "why are you in a wheelchair?" It gives me a chance to advocate for my favorite disease. I want everyone to know what MS is, what it can do to an otherwise healthy person, and that folks with MS are normal people trapped inside a failing body. MS is a disease, but it is also a cause, and I am always looking for opportunities to talk about my cause. I doubt that all disabled folks welcome this question as freely as I do though, so proceed with caution.
- On a related note, unless we are close friends please resist the urge to give me advice on how I can be fixed. Most of the time a person is in a wheelchair because of serious injury or illness. However, I don't know how many people have, upon learning that I have MS, blurted out the fact that they know the cure for MS because of a friend or relative’s experience, and here it is! In contrast, an acceptable conversation starter would be, “did you see the news story about Treatment X, which is supposed to help MS?” Maybe I didn’t see it, and thank you for bringing it up. I have no doubt that your heart is in the right place, but remember that there is a 99% chance that I know way more than you do about why I am broken, and what I can and cannot do about it. I’ve spent hundreds of hours studying this.
- Do kindly step out of my way if I am attempting to navigate through a crowded room. Again, do not go overboard and draw unnecessary attention to me by shouting at the top of your lungs, “Make way! Wheelchair coming through!” or similar. I am hereby publicly apologizing for all the toes I already have, or may in the future, run over.
- Most disabled folks welcome the sentiments of concern, respect, and appreciation for what we are going through, but deplore the sentiment of pity. “I don’t know if I would be handling this situation as well as you are,” is OK. “Keep fighting the good fight,” is acceptable. "You poor thing. I feel so bad for you," is not good.
- Please don’t talk over my head to the person that is with me, as if I am a child who cannot understand you. I know you don’t do this on purpose, but it is really annoying.
- When you are in a conversation with a group of people, please try not to stand in front of me, blocking my line of sight to the rest of the group. Try to open up the group into a circle so I can see everyone, and they can see me.
- A couple of months ago I was preparing to leave a restaurant, and sat before the exit trying to determine the best strategy for getting through those big heavy doors. Sure enough two young men zigzagged around me and barreled out of the restaurant without even asking if I could use some help with the doors. If you see a disabled person pausing in front of a door, then there's a good chance that they would appreciate somebody holding the door open for them. After the doors slammed behind the two young men I threw my arms out in disgust, a pure reaction, and a waitress saw me and opened the doors for me. I was a little embarrassed that I had reacted in that demonstrative way. I don't feel "entitled" to help from everyone who comes along, but the situation just struck a chord with me.
- Finally, if your small child points at me and says things that would be inappropriate for an adult to say, please don’t be embarrassed. They can’t help themselves. I generally find that if I give them a big ol’ smile I’ll get one right back.
I invite readers to leave their horror stories, pet peeves, and general feedback in the comments section.
Thursday, August 13, 2009
I reported the Jordan Pond incident to my neurologist and he ordered the specific diagnostic test that in retrospect we should have ordered from the beginning. I underwent an MRI of my cervical spine, instead of my brain. Most often MS lesions show up in the brain, but for about 10% of us with MS the trouble starts in the spinal cord.
My neurologist and I viewed the MRI films together for the first time. I remember it so vividly. He lifted the oversized translucent prints from the manila envelope and placed them on the backlit viewing panel with a sense of purpose. After all, he was already 45 minutes behind on his appointment schedule, and had earlier predicted that he would find nothing unusual or interesting in these films. As the first few films were quickly examined he whispered under his breath something to the effect of “nothing interesting here, nope nothing here..." Then came that most fateful moment when everything started to move in slow motion. The neurologist stopped in his tracks and began to study a particular film in detail, with me watching over his shoulder completely oblivious to what I was looking at. In subsequent years I became fairly adept at discerning my own MS lesions from all the surrounding stuff that is supposed to be on an MRI. It's a skill akin to looking at an ultrasound of an unborn child and trying to determine the baby’s gender. “Look there, between his legs. Congratulations. You’re having a boy!”
He grabbed the offending film and without a word took it over to one of his associates, who I later learned was an MS specialist. I watched from a distance as they both pointed and nodded, quickly reaching agreement on my fate. He came back and gave me the bad news, “I’m afraid I’ll have to eat my words. This looks abnormal,” pointing to what looked like an innocent little blurry spot on my spinal cord, in the middle of my neck. “What I’m worried about is MS.” I suspect he was momentarily unconcerned about his minor appointment scheduling problems. I had his full attention.
I was purposefully stoic, as if refusing to justify this news with a response would somehow alter its impact. We went back to his office to talk. No doubt he thought the “you have MS” speech would blow me away. I don’t envy this aspect of a doctor’s job (or quite a few other aspects for that matter). As he was trying to console me and indicate that in this day and age many of his MS patients get up and go to work every day, I politely cut him off. I indicated that MS was mentioned to me very early on, that I was familiar with the disease, and that I could deal with the diagnosis if that’s what it was. He didn’t know it, but I had already grieved and come to grips with MS nearly a year earlier.
The neurologist scheduled me for a lumbar puncture, more commonly known as a spinal tap, to confirm the diagnosis. He indicated that we would be talking about MS. He left no hope that the test results would refute the MRI. The spinal tap was a mere diagnostic formality. After the procedure we made an appointment to go over the test results and discuss a treatment plan. I asked if that would be a good time to have my wife come in with me. He said that it would be.
The spinal fluid tested positive for MS indicators. On October 22, 2001, with both Kim and I sitting in my neurologist’s office, I had my official diagnosis. Not only did I have MS, but based on my presentation and test results I was more specifically diagnosed with Primary Progressive Multiple Sclerosis, or PPMS.
I learned that even though the more common form of MS, Relapsing Remitting Multiple Sclerosis (RRMS), had several FDA approved treatment options, there were no approved disease modifying agents for PPMS. My neurologist gave it to me straight. He told me that due to a variety of factors I was likely to have a more aggressive course of MS (it turned out later that he was correct). So we decided to try a relatively new MS treatment that is actually a chemotherapy drug, called Novantrone. This was a very aggressive approach for someone newly diagnosed with MS, who frankly had a mild symptom profile at the time. But my neurologist and I both had the same attitude- I’ve got an aggressive form of MS, so let's not pussyfoot around. I can’t tell you how grateful I am to have a neurologist that listens to me, and who guides me through these difficult decisions.
So what was my state of mind, now that my life had been turned completely upside down? Because of genetics, personality, or internal wiring, whatever you want to call it, I am not an emotional person. This is a blessed trait when things are going poorly. I was not pleased that I had MS, but I did not have strong negative feelings that induced despair or depression. I want to be clear here. It was not that I overcame any strong negative feelings by force of will or extraordinary intestinal fortitude. It was that I never had the strong negative feelings in the first place. Others have described the manner in which I am dealing with MS as brave or even heroic. However, I consider myself simply fortunate to have this innately calm disposition.
So I finally had a name for my problem, and I was anxious to get busy fixing it.
Monday, August 3, 2009
After I regained my composure, something I almost never lose, we drove back to my wife’s office and started surfing the web to see what we could learn about this strange disease that had something to do with a bunch of scleroses, whatever they were. Remember, in the year 2000 it was not necessarily a person’s first instinct to Google any question that popped into your head. It was more like “oh ya, probably we should see if we can learn something about MS from this www thingy.”
We quickly determined that either the PA was full of crap or I completely misunderstood his statements regarding life expectancy. MS only has a minor effect on average life expectancy, and this consequence is only secondary in nature. MS rarely kills you directly. The fact that MS makes you relatively immobile over time tends to shorten your life span by a few years. If you are not an active person, then you don’t live as long. Mankind has known this forever. Our computer research also revealed that there were lots of treatment options and that many patients lead long, fulfilling lives after diagnosis. We calmed down. It was not a hopeless situation after all.
When I went to see the neurologist for confirmation of the MS diagnosis, he was taken aback that the PA had jumped to what he considered to be a premature conclusion. He doubted that my minor symptom was anything as serious as MS. Based on his reading of the MRI film it was highly unlikely that I had MS. “You could find a tiny brain lesion like that in almost anyone’s MRI.” He conducted a battery of tests that were inconclusive. We decided to just wait and see if anything developed.
Shortly afterward my wife and I made the unrelated decision to move our family from rural Northern Maine to the more populous coastal region of Southern Maine. Once we were settled in Southern Maine I found a new primary care physician and told her my story, but this did not occur with any urgency. After all, so far I had a little hitch in my step, and had met with an overzealous PA and an unconcerned neurologist. It seemed as likely as anything that my hitch would simply go away one day, like so many other aches and pains in our lives simply go away over time. My new PCP’s initial reaction to my MS Story was "I doubt that this is some terrible, chronic disease like MS." She referred me to a back specialist and then to another neurologist. The back specialist found nothing to explain my left foot problem. The Southern Maine neurologist was as unimpressed with my brain MRI as the Northern Maine neurologist was, and also suspected something less dire than MS.
During the summer of 2001 we took a vacation with about 20 other family members near Bar Harbor, Maine, the home to Acadia National Park. One day we decided to hike the three miles or so around Jordan Pond. I didn’t think twice about it. At first the hiking path was smooth and easy to walk. Eventually the path became a bit rocky and uneven. I began to have trouble lifting my left leg up over obstacles that it needed to be lifted over. Soon I could not hide this fact from the family members with me on this hike. I didn't want to cause a scene, and at that point I had never discussed my potential MS diagnosis with anyone other than my wife, so I made up a story, and Kim was good enough to play along. I feigned a sprained ankle and even fashioned a rudimentary walking stick. However, as I limped around Jordan Pond my wife and I both knew that this was a new and significant development.
Sunday, August 2, 2009
What I’m referring to is the story we tell about how MS first presented itself to us, what symptoms we’ve battled over time, and the failures and successes we’ve had in the treatment of the disease. We’re often telling our personal MS Story to other MS patients, friends, relatives, medical professionals, and sometimes in the case of bloggers or other media involved people, to anyone who will read it or hear it. So I thought it might be appropriate to post my personal MS Story here. It is by no means a typical story. But that’s one of the things about MS. There is no typical story. Everyone’s story is unique. Some are just uniquer than others.
In the late winter of the year 2000 I was jogging on my treadmill. I don’t recall exactly when, but no doubt this occurred during that oh-so-brief period between when one purchases a treadmill and when one throws it on the trash heap- the same trash heap where you toss your other exercise equipment and certain small kitchen appliances (my bread maker comes to mind). During that winter’s self improvement program I noticed a barely perceptible difference between my right foot and my left foot. My right foot quietly hit on the heel, and rolled to the toe as it is supposed to do while jogging. However, my left foot didn't quietly go from heel to toe. It made a slapping sound. If I really concentrated I could make my left foot quietly go from heel to toe, heel to toe, but it didn't want to. I made a mental note of this observation.
A few months later, after the snow in Northern Maine finally melted, I moved my exercise program outdoors. I noticed after only a few days of jogging that the same phenomenon was still occurring with my left foot. In fact, this uneven running gait was causing my left shin to become strained. "Okay," I thought, "this is starting to affect my ability to exercise so I think I'll get it checked out." I scheduled an appointment with my primary care physician. As I was waiting for the appointment date, maybe two weeks out, I learned from a coworker that a young salesman named Tom, who called on me at the paper mill where I worked, had been diagnosed with multiple sclerosis. I asked my coworker, “What the heck is multiple sclerosis, and how does it affect Tom?” My coworker replied that Tom "Has only a slight abnormality in his walking gait now, but it will get worse. They've reassigned him from Field Sales to Inside Sales to make it easier.” I made another mental note.
When I got to my doctor's office I was assigned to a physician's assistant (PA) instead of an MD. I described my symptoms to the PA and asked if multiple sclerosis was a possibility. He indicated that MS was indeed one of the many possibilities that we would need to eliminate. He scheduled me for an MRI, the primary diagnostic tool for MS. A few days after the MRI I received a phone call from the PA. He told me that the MRI was consistent with possible MS, but that I would need to see a neurologist in order to obtain a firm diagnosis.
My entire body of knowledge concerning MS was still confined to the brief conversation I had with my coworker about the young salesman. So, over the phone I asked the PA what it would mean for me as a person if I did have MS. He asked me how old I was at the time. I told him that I was 36. The rest of our conversation gets a bit fuzzy for me, as it was quite emotional. I can't remember his exact words but he said something that led me to believe that I only had about 20 years to live. I immediately began to imagine that I would never grow to be an old man, retire, enjoy my grandchildren, etc.
I drove to the middle school where my wife Kim works as a guidance counselor (I’m not 100% sure what a middle school guidance counselor does, but I know that my wife is very, very good at it). We went to one of our favorite spots by the ocean and sat and discussed this horrible news. I broke down. This was the only time I ever shed a tear about my MS diagnosis, and ironically it was almost a year later before I actually received a firm diagnosis from a neurologist. However, as I look back over the past 9 years, this day was my emotional low point.