Multiple sclerosis is a progressive disease. Progressing is what it does and unpredictably at that. The goal of treatment is to slow the progression down or to halt it entirely. But measuring progression is not as easy as it may sound. It takes repeated evaluations over a large period of time to document new levels of disability. It takes an even larger period of time to come to the conclusion that a certain level of disability has become permanent.
As MS symptoms can fluctuate day-to-day and visit-to-visit, it can be difficult to establish a baseline against which to try to judge how you are feeling and functioning. This is one reason why newly-diagnosed patients typically have more office visits during their first year than patients who have been diagnosed for years.
Whenever we are in the midst of a relapse (for those of us with relapsing-remitting MS), we may feel certain that our disease is getting worse. But given time, the majority of our relapse symptoms will indeed return to “normal.”
But what do you do when you look back over time and come to the conclusion that your “normal” has shifted and isn't going back to what it once was? I have experienced this situation recently. There were many visits where the neuro/nurse would say, “I think that we've just caught you on a down day.” Fortunately for me, she has an objective way to document how specific symptoms and functions are behaving on THAT particular day and incorporate the results with my self-reported status of the previous few months.
Then one visit I asked, “Seems like I'm always experiencing a 'down' day. When was the last time such-and-such problem was present?” She flipped through the reports in my very tall medical file to quickly read what she had documented after each visit during the previous two years. That's how far back it took to find a point in time before some of my current areas of disability weren't as prominent.
Man, progression really does creep up on you, especially when you keep anticipating that you'll finally get caught on a “good day” for one of those office visits. What I've experienced (which is only evident by looking back) is that my disease has progressed over time. It's not something which we talk about head-on during my office visits; but it is something which is seen through documentation.
So what do you do if you are concerned about your MS progressing? Raise the subject with your neurologist. Ask his/her opinion on how you seem to be doing with your disease. Tell him what your concerns are and how you feel about the state of your disease. When I expressed concern that my disease was getting worse, my neurologist said to me that we would “make sure that it didn't get any worse.” This conversation preceded a decision to change treatment strategies.
By documenting your symptoms and body functions which might be affected by MS, it becomes easier to recognize disease progression. This is only one reason to schedule regular office visits with your doctor. It also provides evidence for an honest discussion with your neurologist regarding how to approach your treatment choices at any particular point in time.
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