Friday, March 11, 2011

What’s In a Name?

Multiple sclerosis is a disease that affects each person differently. The majority of the population has relapsing-remitting disease. This means that the person has attacks and remissions. I started out that way, but over time I progressed. At first, it was relapsing-progressive and now it can be categorized as secondary -progressive. Many people with relapsing-remitting will eventually switch to secondary progressive. I just got there sooner.

How your disease is categorized is actually very important. Because most people with MS have relapsing-remitting, the drugs available currently are for that type only. The goal of treatment is to extend the amount of time someone has relapsing-remitting, preventing the person from evolving into secondary -progressive. I am pleased to report that there are six drugs currently available for relapsing-remitting MS. However, there is only one FDA-approved treatment for any form of progressive MS and I have already maxed out on dosage. Without the approval of the FDA, insurance companies consider using the available drugs as experimental and they won't cover their significant cost.

At least I didn't have the most sinister form of MS, primary –progressive. That's bad and the generative from the start. For a number of years, I was able to be on interferon, the treatment for relapsing-remitting MS. The reason the research community has focused on relapsing-remitting is because there can be significant, positive results. These might be the number of lesions on an MRI or an increase in the ability to walk. It is harder to document improvement was someone in my situation. At this point, it would take a miracle to get me out of my wheelchair and walking again.

So, my doctors and I are left to treat symptoms. There have been significant improvements in treating symptoms. For spasticity in my legs, I have a titanium pump that delivers medicine directly into my spinal fluid. For spasticity in my arm, there are botox injections. I also take a large variety of drugs and supplements throughout the day. I've never been a big fan of labels anyway, so I stubbornly go on living life.

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