C[omp]ute

From: andrew cooke <andrew@...>

Date: Tue, 30 Oct 2012 18:04:18 -0300

If I sent you this link, please feel free to ignore it!  It's just a
brain-dump of information related to recent medical issues that some
people may find useful.  If you want to reply, you can so do publicly
by sending an email to the link below (which will automatically be
posted here), or by sending an email directly to me (which I will not
post).  But please, don't think you have to.  This is just like those
awful letters you get at christmas about other people's kids.  You
really can ignore it.


The Simple Version
------------------

After some weird issues over the last couple of weeks (mainly pins and
needles of various extremities, to various extremes), I was recently
diagnosed as likely (but not yet certain) having multiple sclerosis.

Unfortunately (or fortunately?) that doesn't actually mean very much.
I will go into more details below, but the short version is that how
this develops is still very unclear.  If it helps any, I am not
expecting to drop dead in the next few days, and I think there's a
reasonable chance I could live to a "ripe old age", but the most
likely result will, presumably, be somewhere in that very wide gap.

We will know more, slowly, with various tests, but, still, almost
everything is going to boil down to what actually happens.  MS
progresses in "episodes"; how often those occur is something you only
find out by living through a few.  I just had my first.  As above, I
have no idea when the next will be.  Although in a few weeks I will
have enough info to start taking drugs to help prevent occurrences.

So what "symptoms" do I have?  These are just the damage from my first
episode, and it's possible that they will recover some over the next
few weeks.  But at the moment:

 #. My right hand feels like I have been walking with it down by my
    side, and it has "gone to sleep" or is "full of blood" (I hope you
    recognise what I mean - I think it's a common feeling).  So it
    feels like it has pins and needles and it's a bit more clumsy than
    normal.

 #. My feet sometimes (variable) feel like I am a little bit drunk.
    Not very - there's just some vague uncertainty when I walk.

 #. I cannot fart silently.  Obviously this is by the far the worst
    problem!


The Complex Version
-------------------

The disease is quite complicated: there are three separate parts.

First, there's some shadowy "cause" that is triggering civil war
inside my body.  This is what we are still trying to track down with
tests.

Second, there is the war itself.  My immune system is attacking my own
nervous system, which is not good.  In the short term, we can shut
this down with steroids.  That stops the attack (and I am full of
steroids right now).

Third, there is the collateral damage from the attack.  That gives the
symptoms I listed above.  These may get better depending on how well
the nerves recover, and on how deep the damage was (in my case, as far
as I can tell, the damage is not deep - I still have feeling and motor
control everywhere, more or less).

So what bothers *me* most is the last of these, since it is what I
feel.  But in absolute importance it's relatively unexciting.  What my
doctor cares about is the first, because that is what we want to
target with drugs.  And it turns out that the evidence in my case from
a whole battery of tests is somewhat inconclusive.  Thankfully we have
time in hand - I am so packed full of steroids that another attack is
unlikely for some weeks.


More Philosophical Points
-------------------------

It's natural, on hearing bad news, to think "oh my god I am going to
die what do I do?".  So I sat down and tried to think.  Cocaine and
teenage hookers?  Frankly, it didn't seme that attractive.  I guess I
am old.

When I tried to rate my priorities, all I could find that made much
sense was to try help the people I love.  My life is actually pretty
cool.  I have tried quite hard to make it mine, and I like it.  I
don't want to lose it, of course, but I don't see how to make it much
better, either.  So really, this turned out to not be such a big
issue.

I hope that doesn't sound awfully smug.  I am a lucky man, in some
ways.


Some Closing Positivity
-----------------------

I have been diagnosed with this relatively late in life (which is
probably a good thing); I ended up in the "second best hospital in S
America" (according to the internal newletter, which was amusingly
proud of coming second to some fancy place in Brazil); I was treated
by the head of the department and specialist in MS; we seem to have
caught this on the very first episode (it's common to mis-diagnose for
years).  So there are positives here.  Still, as my doctor says,
things are still way too wide open to make any prediction at all.

Anyway, that's all for now.  Take care.  Andrew