Wednesday, January 14, 2009

Leftover Remnants

One of the defining markers of MS is the remnants of "attacks". 11 years after my initial attack, I estimate that I am at about 97%. I still have measurable weakness in my right side and frequent pain in my right side extremities that I can only describe as similar to growing pains. It took only a few months to get back on track physically.Those are the remnants of my first attack.

My second attack, a year and a half after the first, involved the left side of my face. It drooped and chewing was exhausting. But that time it only took a couple of weeks to recover. And I did recover completely, though I do have a remnant from that attack as well; my left nostril occasionally loses feeling (not really a disability; luckily just somewhat annoying to me and interesting to the neuros and my dentist).

We know that the disease modifying drugs lessen the frequency and severity attacks, which in turn means less physical damage to the brain and less disability.

Why we recover in the different ways we do is still a subject of study. Some of us recover quickly from attacks while others don't. Some recover completely, while some are left with what is termed "residual disability" (RD).

I recently read a report on a study that adds support to the use of immunomodulating drugs for patients with MS:

"Findings indicated that RD after 1 year was observed in 54.5% of relapses. As well, higher risk of RD was associated with occurrence of a severe relapse. Incomplete recovery at 1 month was highly predictive of RD at 1 year....

Incomplete recovery at 1 month is a predictor of long-term persistence of RD. Higher relapse severity is also associated with higher risk of RD. Risk of severe relapses is lower in patients treated with immunomodulating drugs."

Every single event that happens in the brain leaves its mark, good or bad, chemically and/or physically altering the landscape of our gray and white matter. We are losing brain volume. Every relapse causes damage. And that damage accumulates, eventually giving us altered abilities. Logic says that reducing the number of relapses is good. Logic says that reducing the severity of relapses is good. The less damage that happens to the brain is good, right?

But what happens if you are medically intolerant of the disease modifying drugs? There are currently studies under way for more than 2 dozen different drugs (besides the DMDs) that show promise. Do some research, ask questions of other MSers who are on different drug regimens, talk to the folks at your nearest MS Society office and ask them to refer you to people willing to share their stories with you. Get information and if you don't understand it, find someone who does. If you're not a "take action" type of person, become one. Pretend it is your young child that needs assistance. You'd move heaven and earth to help your child, so do it for yourself now. You deserve it.

And while you are mulling over all the info and deciding what to do next, you can eat right, sleep well, and exercise.

Most of us have heard our neuro saying that where you are at 5 or 10 years after onset of MS is as good a predictor as any of where we'll be farther in the future. Of course, with MS, prognosis is next to impossible. Information from 10 years ago was predicting that by 19 years after onset, I'd be needing a walking aid of some sort. But since I've been taking one of the disease modifying drugs, I may have altered that prognosis and actually extended the time between onset and need of a walking aid. I'll let you know in 8 years.




However.....the nice thing about leftovers is that once they started smelling odd, or get troublesome, you can always toss them out. Good riddance. Alas, relapse remnants refuse to simply be thrown away in the trash.

Shauna said...

They're also often better the next day, though not always with MS.

Interestingly enough until a couple of years ago, my recovery from my first attack was still going on. So either damage was being repaired for many years or the road crews found a way to detour around it. Hard to say which without an autopsy and I don't need to know that badly.

Researchers are also looking at repairing the damage done by demyelination, which is the next step after they find a cure.