The L.A. Report – MS Edition

09-30-2023

Today is the 20^th anniversary of my MS diagnosis. It’s still very mild (knock on wood).

My initial symptoms (that made me seek advice) was that I had a very slight problem with enunciation and my eyes were doing a weird jittery thing when I would pan them all the way to the left. I also had slight dizziness and lightheadedness from time to time and a lack of energy during my runs.

So I thought that something just isn'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.  The MRI was definitely abnormal.

They did some blood tests to rule out Lyme disease and HIV and ordered a spinal tap (a.k.a. lumbar puncture).  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 (at that time – since surpassed) and two weeks of running.  But the test results confirmed my hunch:  I had Multiple Sclerosis.

Today my enuncation problem is pretty infrequent – it happens mainly when I’m tired or stressed. The eye problem is gone but I periodically do eye exercises to strengthen my eye muscles. Nobody suggested I do that, it just made sense to me.

My right hand and arm (and even my right leg somewhat) are very uncoordinated. I can no longer play keyboards and I have to drink with my left hand. I can still write with my right hand but it’s very slow and a little messy. But I’m not complaining!

I can still run (albeit slower and slower all the time) but lots of people with MS can’t even walk, much less run. So again, I’m not complaining!

I still get dizzy, especially when I tilt my head back, and I get a little stumbly walking, especially in the dark when you don’t have the visual clues for navigation. But I’m not complaining!

I did take an injectable drug every day the first five years but I don’t know if it helped or not. None of the drugs (at that time, at least) were all that effective. There are new drugs coming out all the time but I haven’t heard of any that are all that great. And since almost everyone has a different type and severity of the disease, there’s certainly no one-size-fits-all (or even one-size-fits-some) drug. There still is no cure, of course, and at this point, the best they can hope for is to slow down the progression. But even that seems elusive. So I’m not taking anything right now.

Nobody knows what the next 20 years hold, but I’m keeping my fingers crossed!

Jay