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Sunday, December 21, 2014

Incurable

"Did you call your Doctor?"

How many times have you been asked this question? Isn't it just a natural part of the MS experience?


We are so trained to immediately assume that something can, or should be done for every physical ailment. The truth is, there isn't always an answer, there isn't always a quick fix, and in the case of MS, there isn't always a cure.

When a new symptom emerges, I often hear my loved ones ask me to immediately run to the phone, and let my neurologist know. I have been on a disease modifying medication for the entire course of my five years with MS, and I have been treated for dozens of relapses in that time. My average yearly relapse rate is about 6-7 per year, which is quite a lot for RRMS. Most of the time, I am treated with steroids such as Prednisone and Solu-Medrol for each relapse, and then life carries on.

The next question I usually get after the "Doctor" one is: "Did the steroids help? Are you feeling better?"

The answer is typically, no. Steroids do take effect almost immediately, but it can take days, weeks, months, or years for symptoms to resolve; or they may never go away. The typical expectation is that the Doctor fixes all, and that the treatment is immediately effective. This is something  that has become an underlying expectation in our society. Unfortunately, MS patients learn quickly that our options for treatment, as well as the successful outcomes of such treatment, are less than awe inspiring.


Our selection of disease modifying therapies has skyrocketed from a whopping ZERO in 1992, to twelve today. Some of these are even oral drugs, not the injectables we were literally "stuck with" for so many years. Having these options is something I am very grateful for, and I do not take this for granted. The frustration lies in the fact that these therapies are not cures. They are treatments, and none are perfect. They reduce annual relapse rates by varying percentages, and they lower the number of lesions visible on MRI to varying degrees. Most patients will tell you, however, that these are not perfect fixes. When we do have a relapse, we are left with steroids as our go-to medications, and we all know what a drag these things can be.


As MS patients, we learn that running to the doctor's office often won't get us anywhere. We are often left with no clear answers, no clear options, and a variety of possible treatment modalities that may or may not help. We begin to run our own care after a few years. We know when we need steroids, when our medications are no longer doing the trick, and when to notify the doctor. We learn to evaluate and assess our bodies in a way that healthy people never do. We learn how much heat we can tolerate, how much exertion we can handle, and how much stress we can endure. We are the masters of our own bodies. The assessment is ongoing, and we never stop scanning for potential new symptoms.

The simplest of questions are often left unanswered. "Am I having a relapse?" The answer is that no one can really tell you for sure. There are guidelines....such as new or worsening symptoms lasting 24 hours or longer, separated from the last episode by at least 30 days constitutes "relapse," but there is no diagnostic test. MRI often does not correlate with physical clinical symptoms. An MRI can look horrendous, while a patient feels fine. Likewise, an MRI can look perfect while a patient feels awful. MRI is great for diagnosing MS, but after that the benefits are questionable.


MS is a difficult disease to live with for a myriad of reasons, but frustration at the doctor's office is one of the biggest irritants. We have a serious, terrifyingly unpredictable disease that cannot always be helped by medicine. Treatments are imperfect, fraught with side effects, and incredibly expensive. All we can do is hold on and remain hopeful that our inevitable cure is just around the corner, and remember that there are brilliant research scientists committing lifetimes to finding it. 



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