About Me

I'm cautiously optimistic.

Wednesday, August 11, 2010

The Backstory

With all the questions I'm getting and will be getting, it seemed like a good idea to come up with some kind of press release, public service announcement, preemptive answer to everything you did or didn't want to know about my adventures in multiple sclerosis (MS). I'll try to keep it simple and short; we all have a life to live here.

Well it goes a little something like this:

In the fall and winter of 2004 I began to experience strange symptoms including extremely low blood pressure and passing out for no good reason. This turned out not to be a very useful lead and after many tests, theories still abounded-- everything from spinal meningitis to dehydration was considered. It was treated a little more urgently when my I began experiencing strange heartbeats; I was hospitalized, broke out of the hospital...tests continued and the diagnosis finally came. At this stage, it was called Acute Disseminated Encephalomyelitis.
The article states, "While ADEM and MS both involve autoimmune demyelination, they differ in many [...] aspects. Some authors consider MS and its borderline forms to constitute a spectrum, differing only in chronicity, severity, and clinical course, while others consider them discretely different diseases." (What I heard from many doctors was that if symptoms continued, I'd likely be re-diagnosed, since ADEM is a single-occurrence outbreak).
 The problem was basically that my own immune system was treating parts of my brain like it would an intruder. These diseases are so hard to diagnose because the attacks can happen virtually anywhere in the brain and upset many of the functions the brain is in charge of, which is just about everything the body does. The treatment I received was a series of corticosteroids designed to put my immune system back into line.

Happily, it worked great. I was wiped out for a few months but the symptoms went away and didn't recur throughout high school, into a year of college and a two-year sabbatical as a volunteer missionary in New Caledonia. The occasional MRI scans showed that there had been small inflammations in between scans but there never seemed to be anything current and as far as I could tell, I had no symptoms.

I've been back from New Caledonia about six weeks now and it was pretty standard procedure to check up on the old brain with an MRI-- I used to get them every six months or so, and was overdue at two and a half years.

The scans showed continued inflammation (some of it happening right now) and was just enough evidence to officially diagnose this condition as Multiple Sclerosis. You might be thinking, oh man, what a bummer, etc. But it's actually a relief, because:
  1. I know what it is, instead of knowing about inflammation but still thinking of it as ADEM or just "the brain disease". 
  2. Now we can treat it. It's important to do that as soon as possible, and when it's caught early the outlook is great. I'll put this is bold because it's good news: I will probably have a pretty normal life. Thanks to modern medical science and technology and the fact that we've caught this early, I can expect a normal life-span and few to no handicaps.
That doesn't mean I'm totally off the hook. There are treatments to undergo, and I need to keep on the look-out for new developments. I don't plan on updating this blog regularly, but I will post updates on treatment, anecdotes, and answers to questions if you have any that are unanswered after reading the above.


1 comment:

  1. Andrew!!! Wow this is an incredible story and I'm glad that you've decided to keep a blog of it. I've had a lot of question about what's been going on and it will be nice to keep updated. Gosh... I can't believe what you've been through and what you're still going through. You are one of the bravest people I know! Keep up the optimism and good luck with everything :)