Sunday, May 21, 2006

On Cures

A good thing about having projects that are too big for computers to do quickly is that sometimes you get a few minutes here and there to do other things while you wait on the computer. I found this in such a time today. It's a brief article in the London Free Press about actor Teri Garr, who revealed in 2002 that she has MS. I particularly enjoyed this quotation, though I don't share the sentiment:

Garr says she has a set answer for anyone who tells her how much they ache because she has the disease: "My heart bleeds for you too because you're an idiot. There'll be a cure for MS one day. There's no cure for being an idiot."

Tuesday, May 16, 2006

This is Spinal Tap

Talked to the doctor today, and he said that the results so far were, as with everything else in my case, a "soft call". I tentatively have a spinal tap scheduled for June 2nd (but have to firm it up with the office staff). Why so long? Basically because both the doctor and I will be traveling in the meanwhile. The hope is that the spinal tap will give us enough additional evidence to turn this soft call into a sure thing. So I don't expect any more news for a couple of weeks. When I get it, I will be sure to share.

Monday, May 15, 2006

Childhood Preparation

Another thing that's helping me cope with the idea of having MS is that I've always liked macabre stuff. I had an Edward Gorey coloring book when I was a kid (thanks Mom!); I dug the Mod style in high school and college (and would still if it weren't now called Goth instead). I enjoy the stories of H.P. Lovecraft and the cartoons of Gahan Wilson. I love movies like The Nightmare Before Christmas. If I can fall for a patchwork gal like Sally, I basically have no choice but to accept eerie occurrences when they befall me.

There are limits, mind you. Just because I like The Addams Family doesn't mean that I'm going to spend all my time with creepy crazy people who want to murder me. But it does give me a different lens through which to view my situation. It's a fictionalized, simplified lens, and it represents a model which does not incorporate actual human pain and sadness, but it's valuable nonetheless.

Using the Auto-immune System to Beat an Auto-Immune Disease

Audrie sent this article to me today. It describes using the body's own immune system to target and destroy the "renegade" white blood cells that have improperly targeted myelin as a Bad Guy. The process is still in early trials, so Yours Truly won't get to try it for a while (assuming it passes all its tests), but I love the idea of it. The body wants to be healthy. Just give it a little help, and it can be. It would still be nice to know what causes MS in the first place, though.

Sunday, May 14, 2006

Unwelcome Vigilance

It's sad to notice that, from now on, every time I bump into something, or my hand shakes, or I drop something, or I trip, we will wonder whether it's a flare-up of MS. I am clumsy enough to create plenty of opportunities to worry. There should be a standardized scale of the maladroit, so that I could take a baseline reading now; then, in the future, I'll be able to ignore any klutziness that falls within my normal range.

Tuesday, May 09, 2006

Second MRI

Today I had a second MRI. The first one was of my head. This second one was of my neck (cervical spine). The neurologist wants to see whether I have any plaques or lesions in that area, in addition to the ones they've already seen in my brain.

The test was done at a new building, just a couple of blocks from my work. I walked there in under 10 minutes, and I think it would have taken nearly as long to drive, what with having to walk to my car, pull out across traffic, make U-turns, park, and get from my parking place to the entrance of the building. Save the world a few hundred steps at a time, that's my motto for today. The people at the imaging center were all super nice, and had an excellent business-wide attitude. Every step of the way, I had one-on-one time with whoever was attending me, from the checkin receptionist to the nurse who set me up with a personal locker in a private changing room to the lead technician who came out to apologize for running late. All the technicians had a caring attitude and made real efforts to relate to the patients. I admire the corporate ethos that encourages this kind of pervasive caring.

They were also quite careful and thorough about the test itself. When my first machine, a Toshiba, had what looked like an imaging artifact in the picture, they re-did that portion of the test on another machine (a Siemens). That took extra time and effort on their part, but also confirmed that what they were seeing was, indeed, only an artifact, and not a Hot Wheels model car that had somehow lodged in my spine, or whatever it looked like.

The doctor won't see the results of this MRI until Thursday (on which day I'm flying to Utah anyway). I am betting that I won't know more until next week. I guess there's a possibility we won't schedule a spinal tap if the results so far are conclusive, but right now I'm still assuming that we will, so it'll be another couple of weeks total before the doctor has all the results in hand. Stay tuned for more exciting developments!

Monday, May 08, 2006

Tuesday Thoughts

I'm going to have to come up with better titles for rambles. "Tuesday's Thoughts" will soon be rather ambiguous otherwise. Plus, I had some of these thoughts yesterday. And double plus, I just realized it's not Tuesday.

One bummer about having an expensive disease is that it ties me to a medical insurance, and therefore to a job, in a new way. I've been planning to retire at age 50 for many years now. Recently, my lovely wife began thinking that it wouldn't be a bad idea for her to retire at age 50, too. But now, in addition to imagining carefree lives of mixing piña coladas and pursuing hobbies, we have to imagine paying for an expensive drug habit too. Guess we'd better make those drinks virgin.

Having been basically healthy for most of my life, depending on regular doses of a pharmaceutical to keep me going seems like a big change. But it's not actually much different than the other constraints of living in a body; it just places me in a more specialized ecological niche. Some species can live in many climates, some in just one. I guess I'm changing from a black bear to a cave fish. I hear the caves host some pretty good parties, though. There's plenty of other perspective to be had, too. A few hundred years ago, something like half of the people who were my age had already died. I share this world with plenty of beings whose opportunities are more limited than mine. Or you can go the other way, and imagine a nation of super-heroes. To them, our most fulfilled lives might seem wretchedly limited: we can't even fly, for heaven's sake!

Friday, May 05, 2006

Little-known Benefits of MS

You know, people are all down on MS, but I think that incurable brain diseases get a bad rap. I'm compiling a list of the benefits of MS to help improve its image.

First of all, if you're going to get some kind of incurable disease, a brain disease has got to be tops for coolness. When the incurable diseases go to parties, do you think that Incurable Foot Disease is constantly surrounded by the ladies? Or Incurable Nose Disease has a stylish wardrobe? The answer, my friends, is no; but when Incurable Brain Disease walks in the room, heads turn. The guy's got serious mojo.

I've also now got an ironclad excuse for acting eccentric. In the past, I've had to deal with some strange looks and tsk-ing noises, because it was assumed that I was just some hippie weirdo. As soon as I've got my diagnosis, though, I'll be in the pink. Maybe I'll get a little ID badge like the feds are always flashing on cop shows. Someone shakes their head at my antics, and BAM! Out comes the badge. Who'll be shaking his head then? Me, that's who. Sadly, and pityingly, with a pinch of stern authority thrown in for good measure.

It's late, so I'll leave the many remaining boni for another time, but I've got to mention the main perk: zombies do not dig the folks with MS. Our brains have this weird coconut flavor that just does not complement the taste of regular brains. Next time there's a zombie outbreak, you mark my words: I'll be sitting pretty, hanging out in the living room and sipping mint juleps while everyone else runs around screaming in fear.


On another subject, I've noticed a curious inconsistency in my friends' attitudes. Sure, they all talk sweet about how they wish they could help when I break the news. But the minute I suggest the obvious helpful action of becoming brain donors, they change their tune. The most common excuse is, "oh, you don't want my brain." Um, actually, I do. That's why I suggested it, people. You're going to have to do better than that if you want to stay on my good list.

A Yardstick

So, just to put things in perspective, yesterday I cleverly cut my finger while trying to take apart the furnace to clean our air filter. Don't worry, my tetanus shot is current. Moment to moment, I have to say that this little cut on my finger is causing me quite a bit more inconvenience than MS! Today I can type again (obviously), but I still have to remember to walk on Audrie's right side if I want to hold hands with her.

Evoking My Potential

Yesterday I had my evoked potential tests. I won't get the results until I next see the neurologist, which will be after my second MRI and my spinal tap (probably 3-4 weeks total).

The test itself was kind of interesting. Both tests work basically the same way. I got electrodes hooked up to my head, on top of conducting gel that is like the stiffest hair styling product you've ever seen. For the rest of the day, I had all these little areas of crazy hair sticking up every which way. A little stiffer, and I could have turned my head into a weapon. So anyway, electrodes on the head, and then a stimulus applied to my normal perceptual apparatus: my eyes and the skin of my ankles. The computer recorded both the stimulus and my response to it, so I was basically a portion of a machine for 40 minutes or so. Whoever first thought of measuring themselves this way must have been psyched. It's a big creative leap to go from measuring the response of a tube or a transistor or something, to measuring the response of an entire person's sensory system.

For the visual part, I just had to look at a checkerboard pattern of 1024 black-and-white squares on an old tube-style monitor. They flipped back and forth periodically while I stared at the center of the screen to get maximum coverage of my visual field. For the somato-sensory part, a word which my spell-checker really does not like, I got mild electrical shocks applied through pad electrodes on first my left ankle, then my right. They were quite mild, although they made my toes dance like a drunken goth at a midnight rave. It felt a lot like having my ankle right up next to the jet in a hot tub.

Audrie found out some good news. She looked into our insurance, and it turns out that our plan covers Avonex (the medication that the doctor is suggesting), with us only having to pay $30 a month. Avonex wholesales for something like $20,000 a year; that's a nice discount! We also have a pretty solid disability plan (which I hope never to have to use). So in addition to the great social support network which surrounds me in the form of all my friends and family, we've got a good insurance fallback as well.

Initial Status

Here's a copy of the email I sent to my friends and family Wednesday of this week, the day after I first heard that I might have MS.

I went to the neuro-ophthalmologist yesterday to get the results of my MRI from last week. He said that the MRI showed lesions in my brain. I've also had two demyelinating incidents that happened at two different times and at two different places in the brain. The whole package, lesions + spatially diverse events + temporally diverse events, adds up to multiple sclerosis.

The MRI showed other areas where nerves had become de-myelinated, not just the ones associated with my recent double vision. This suggests that I have had nerves get de-myelinated in the past, just without any symptoms that I noticed. The fancy name that the doctor used for the lesions was "regions of T2 hyperintensity".

Today I went to see a neurologist to take the next step on finding out whether I have MS, and what to do about it if so. MS is hard to diagnose because you have to rule out all the alternatives first. I'll be having three more tests that will help firm up a diagnosis. I also received information about treatment and prognosis, if I am diagnosed with MS.

Tomorrow, I'll have an evoked potential test on my vision and my somato-sensory systems. This is a test that measures how well electrical signals travel through your nerves. While an MRI takes pictures of your body, this test measures how well your body works.

Next Tuesday, May 9th, I will have a second MRI. My first MRI was just of my head. This second one will be of my neck area. The purpose is to discover whether I have any more plaques (scars) on nerves in my neck area. If I do have more plaques there, it lends weight to a diagnosis of MS.

In a couple of weeks, I will have a spinal tap. In a spinal tap, a small amount of the fluid that bathes your brain and your spinal cord is extracted and examined. The doctor will be looking for indications that nerves are being demyelinated.

Once I've had all these tests, the doctor will be able to make a better determination as to whether I have MS. So far, MS is still the likeliest explanation, and we're moving ahead on the assumption that I have it.

There are a handful of drugs available to treat MS these days, although there is still no cure. The doctor gave me an information packet about Avonex ( http://www.avonex.com/ ), which is a once-a-week injection of interferon beta-1a. The purpose of all the MS treatments is to slow the formation of lesions in the brain and central nervous system. If you start treatment early, then the prognosis is generally very good. This is because permanent damage and disability generally only happens in MS after multiple repeated demyelinating events. Eventually, the conducting fiber of the nerve itself, the axon, can be damaged. So if we reduce the incidence of demyelination, it is much less likely that any permanent damage will occur. The side effects of Avonex are flu-like symptoms the day of the injection. For most people, the severity of these flu-like symptoms decreases over the course of treatment, as your body gets used to it. However, if Avonex does not work for me, there are other options as well. Their basic approach is all the same: to decrease the incidence of demyelinating events.

In summary, I will be having a few more tests to help determine whether I really do have MS. I'll have the results of all the tests in about a month. Right now, it appears quite likely that I do have MS; I just do not yet have a formal diagnosis. There are good treatment options for me if I have MS. I expect a basically normal life, and a basically normal span. I'll keep you posted as I learn more.

So how am I feeling about all this? Curious, accepting, uncertain, scared, relieved, skeptical. MS is a strange disease, and its symptoms are all over the map. I don't know what the future holds, but I intend to meet it with eyes, arms, and heart open.

It Begins

I'm starting this blog as a place where I can write about, as E— put it, "my path through life with MS as my constant partner". I don't yet know what I'll put here, but to start with, I'll post updates on my status, the progress of my diagnosis, and whatever related thoughts come to mind. So that will probably include a fair dose of silliness.

I want to keep this separate from my regular blog because it has a different purpose and a different audience, but I may find myself doing some cross-pollination as time unfolds.

Because I am lazy, I also plan to post updates here rather than trying to email them directly to all my wonderful friends and family.

Anyway, welcome and thanks for stopping in. Let's get started, shall we?