Well it’s official. I saw the neurologist today. My diagnosis has moved from probable MS to clinically definite MS, relapsing-remitting type. In spite of all my research and my own suspicions that I might have MS even before my second hospital admission, I suppose a small part of me hoped that a neurologist specializing in MS would look at my records and find some other conclusion. I have always believed that one should hope for the best, but expect (and prepare for) the worst. So, I was ready for this.
We had a long discussion about the different medications and decided on a plan of treatment. Having had a small taste of what this disease can do, I know that I don’t want to see any more. At the same time these medications are not mild by any stretch of the imagination. Some of the side effects are pretty harsh. While the alternative, another relapse, I have to admit that I am more than a little worried.
The medication that we have decided to start with has years of data showing that is effective at slowing disability progression, reducing relapse frequency and reducing the number of active brain lesions. This all sounds great until you get to the side effects and warnings. Most commonly causes flu-like symptoms (fever, aches, chills, etc.) and injection site reactions (hardening of tissue, rash, etc.). Even if I could get over having the flu three times a week and strange lumps the other possibilities give me pause. While less common, the FDA felt it was important to enough to include a warning that this medication can cause suicidal ideation, impair liver function and reduce red and white blood cells. Seriously?! This is the TREATMENT?! For a very brief second this list makes you want to take your chances with the disease.
Then I remember what it is like to lose control of my body. Unless you have experienced this, you can never understand how incredibly terrifying it really is. It is one of the few things in life that you can actually count on. Most people don’t even give this a moment’s consideration. We all expect our bodies to respond when and how we want them to. To realize just how fragile that control really is, was a truly humbling experience. I am awed by the marvel of engineering and design that is the human body. I mean the sheer complexity of even the simplest action is amazing.
Options weighed out, I must fight to maintain the privilege of independence. I am prepared to take this challenge on and hope for the strength to endure what is to come. It’s a good thing I have a bit of a defiant steak, looks like I’m gonna need it J
No comments:
Post a Comment