My Multiple Sclerosis
4-18-2007
I’m often asked how my MS is. I appreciate your asking. This write-up is not to be construed that I’m
tired of the question! But in case
you’re wondering and I’m not around to ask, here’s the current state of my MS:
When I was diagnosed in September of 2003, my main
symptoms were
1)
I had some problems enunciating some words. They would get a little caught
sometimes. Not that I couldn’t think of
a word, just that it would come out a little distorted or I would have a hard
time getting it out.
2)
When I would pan my eyes to the left (not the
right), I could only move them a little more than halfway, then they would
start to shake.
That’s mainly all I noticed. Not bad, considering the list of symptoms
most MS patients experience.
Today, I still have those symptoms, but they are
not quite as bad. I have some new ones, however:
1)
The coordination in my right hand (but not my left)
is getting pretty bad – maybe 50% as bad as it used to be (if it’s even
quantifiable at all). My handwriting,
particularly cursive, is getting a little hard to read – maybe like a typical
man now!
2)
My balance is not great. I do a lot of little “mini-staggers”, almost
as if I’ve had too much to drink (which is ironic, since I don’t drink alcohol at
all)! I have to be a little careful when
I hike next to a drop-off or cross a stream on a log or rocks.
3)
My right leg and right arm are getting a little
uncoordinated, especially when I run. When
I ran the L.A. Marathon last month, what bothered me more than anything was
that my right arm got very
tired! So I would tuck it into my side
periodically. If I try to wave my right
arm when running, it flops around very uncoordinatedly.
4)
I get dizzy when I turn my head certain ways or
turn it when I’m bent over.
5)
My ears ring almost constantly, although it’s
gotten a little better lately. I’ve also
been told by an audiologist that I have mild to moderate hearing loss in the
upper frequencies, which I don’t know whether or not it’s related.
6)
I get pretty fatigued so I take a 30-minute nap at
7)
My MRI shows that one of my lesions has gotten a
little worse, which kinda makes sense based on the way I feel.
But I still have to say, that all these problems
are very mild. I consider myself very fortunate, considering the horrible things that MS can do to
people. And I know very well that my MS
can (and probably will) get progressively worse (at least a little). But for now, it’s just a minor inconvenience
(knock on wood!).
FLASHBACK – Here’s how I was initially diagnosed:
Back in 2003, I was feeling a lack of energy,
particularly during my runs. I was also
having a very slight problem with enunciation, slight dizziness and
lightheadedness from time-to-time and my eyes were doing a weird jittery thing
when I would pan them all the way to the left. So I thought that
something just wasn’t right somewhere. My general practitioner at
Kaiser Permanente (my HMO at the time) didn't see anything glaringly
obvious but gave me a referral to one of their neurologists. The
neurologist also didn't see anything obvious but enough to warrant an
MRI. I had the MRI in August of that year and, indeed, it was definitely
abnormal.
They did some blood tests to rule out Lyme's
disease and HIV and ordered a lumbar puncture (nice way of saying spinal tap).
I'll spare you the details of the complications I had (many of you already
know). Suffice it to say I missed two days of work (bringing my
life-total to five) and two weeks of running. But the test
results confirmed my hunch: I have Multiple Sclerosis.
I met with an MS specialist a couple weeks later
for a second opinion – not that I doubted the diagnosis, but more to get her prognosis
and discuss my treatment options.
At that time, there were only four drugs on the market and none were
pills – they were all injected, so I wasn’t looking forward to that; I already
felt like a pincushion, having been stuck with so many needles during the
diagnosis phase!
If I thought I would end up in
a wheelchair, I would have been freaking out. But my symptoms were
so very slight and appeared so late in life (age 45) that I must have
a very mild form of it. So I've never been very concerned.