Sunday, December 4, 2011

Measuring MS Progression Over Time

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.

Read this post in its entirety:

Talking to Your Doctor about MS Progression

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