Friday, 7 December 2018

You win some, you lose some

Another neurological checkup today.

Good news first - the eye nystagmus (when the eye makes fast, repetitive, uncontrolled movements that interfere with vision and depth perception) that has been present for the past year wasn't noticeable at my exam today.  

In the scheme of things, that's pretty small.  But I'll take it!

The bad news - my EDSS (Expanded Disability Status Scale) score continues to get higher and indicates what I already knew.  There is disease progression happening.  And I can just feel it.

The disability scale for people with multiple sclerosis runs from 0-10.  And goes up in 0.5 increments.  I am now classified as having mild disability in two functional systems, but still have the ability to walk.  There are 8 functional systems - pyramidal, visual, cognitive, spatial, brain-stem, sensory, bowel/bladder and cerebellar. I'm about a 2.5, varying by the day.

I'm not going to change medications again, as it's been a difficult year because of that.  But my neurologist and I are always reassessing.  Shout out to Dr. T.

Meanwhile, I'm going to add a third volunteer role to my life.  It's a study through the MS Clinic and is called "Establishing an Imaging Biomarker for Disease Progression in Multiple Sclerosis."

I enjoy volunteering - the ambassador work, the peer support.  And if imaging my brain, performing neurological and cognitive tests and poking and prodding will help the future direction of MS, of course I have to do it.

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