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 noon almost every day, although when I’m not working I usually get a full 8 hours of sleep and don’t seem to need the nap most days.

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.