Well, you asked...

I am finished with classes. I have one week of finals and then this semester is over. I am tired. I am sure of nothing but as always, cautiously optimistic.

This is scanty information, but let me repeat: I am dang tired.

The Needles

I had my training for the injections on Monday after school and by the end I was ready to do my own. They gave me an auto-injector which makes it really easy. It's painless and fast. On Monday, I injected into my thigh. Yesterday, into my arm. On Saturday, I might do the stomach (you're supposed to rotate injection sites) but that's pretty hard core.

Sporradic Updates

بسم الله الرحمن الرحيم

School has started again, and I've been so busy that I almost forgot about this blog. In the past few weeks, I've discovered that some days I have less energy than others, like any normal person, but with perhaps somewhat lower lows. It's hard to predict when it will happen, and it's hard to learn to "budget energy" as they say in the MS circle, but so far I am doing well in school.

Next week I will start the three-times-a-week injection therapy that some of you have heard about. I will learn how to do it myself and continue this treatment in the long run as a preventative measure. In most MS patients, this sort of treatment makes the symptoms less frequent and less severe. So that's exciting!

But I'm not a huge fan of needles. My strategy thus far in life has progressed from kicking and screaming to looking the other way and not thinking about it, but it looks like I'm going to have to man up a little and stab myself til I don't mind it anymore. That, or get really friendly with a nurse.

As always, hit me up with questions or comments. Your prayers on my behalf are always appreciated.

-livingston

I feel happy! I feel happy! (I think I'll go for a walk)

As you may have guessed from the title, I am not dead yet. In fact, the blitzkrieg of corticosteroids is over and the lingering side effects are almost completely gone. I feel great. I run every day, and I'm getting close to my high school speed for the 5k. I'm going back to school at BYU next week, so I'm spending a lot of time brushing up on my Arabic (didn't get to use it much in New Caledonia) and doing the standard back to school stuff.

Meanwhile I've settled on a long-term preventative treatment that will begin soon. It shouldn't be as draining as the blitzkrieg.

If you have questions or comments, keep them coming. you can send them to stilllivingston at gmail dot com.

adventures in side effects...Blitzkrieg day 5

The IV battle is over and the pills (designed to taper off during the next five days) are more manageable. The side effects are fascinating.

My teeth feel strange, as though they've grown and annexed other parts of my mouth.
There are moments of not quite feeling myself, followed by longer stretches where I'm obviously not myself, which invariably settle back down into temporary normalcy. Vertigo is minimal. Aching in joints comes and goes.

I'm pretty sure good things are happening.

Blitzkrieg, days 1-3

As in 2004, the neurologists recommended that I undergo a treatment of corticosteroids designed to whip my immune system back into shape and get it stop eating my brain. I had the option of anywhere from three to five days of one-hour infusions at the local hospital, to be followed by a course of the same treatment in pill form.

Day 1

I unexpectedly passed out on day 1, when the nurse tried to put the IV in my left arm. They made me put the oxygen tube in my nose, put the IV in the right arm and gave me grape juice. And took me out to the parking lot in a wheelchair. You win some you lose some.

A common side-effect: sleeplessness. I might have gotten a couple of hours in that night, but it wasn't pretty.


Day 2

Pretty unremarkable.  Right arm a little sore where the foreign object is placed. Could probably get used to it.


I slept all night thanks to another medicine (medicine to fix medicine and so on) and was ready to go for day 3.

Day 3

Side effects: About an hour after treatment this morning, my right hand (which holds the IV catheter) began to swell up and stiffen. No color change, no significant discomfort, but pretty weird. Doctors agree that three days will be quite enough this time around. 

Mom pulled my IV out today, after which I was simultaneously wired and exhausted. Tomorrow I start the pills to taper off the treatment.

This "blitzkrieg" treatment is just to kick things off. After it's over, we'll be looking at more long-term, preventative measures.

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.

-Andrew