Tuesday, 11 June 2013


Today was check-up day.

I had the chance to talk with my Neurologist about my stable brain MRIs, my recurring relapses, and where-to-go-from-here in terms of medications.

He confirmed what I had expected:  All of my recent, and constant, disease activity is spinal cord, not brain, related.

So, back I go to repeat cervical and thoracic MRIs to compare with my previous ones showing disease activity at the cervical 4 level.

Because all of my physical presentations in the past year (and everything except for the initial disease presentation four years ago) have either been spinal cord or optic nerve related, we are testing again for Neuromyelitis optica.  Better know as NMO, it's an interbred-cousin of MS that only affects the spinal cord and optic nerves in terms of disease activity, but brain lesions can also be present.  This is a very uncommon form of demyelinating disease, but we need to repeat blood tests as NMO has a very different treatment course (and in fact MS treatments can actually cause NMO to worsen).   I had these blood tests last year, but they only have a 60% accuracy rate when a negative antibody response is seen. 

Mostly likely, they will be negative again.... and this will continue to be the plain-old-variety of MS.

I am going to stay on Copaxone for at least 6 months so we can fully assess its efficacy for me.  We reassess at that point.  And then, if I am still having frequent relapses, my Neurologist wants me to consider Gilenya (an oral medication - not the highly touted Tecfidera that just came on the market), or in the future, Alemtuzumab, which has historically been used to treat Leukemia, but now is focused on MS as an "immune re-boot."

So there you go.  Back to life now...

1 comment:

  1. I learn so much by reading your posts - thank you. Lots of love. x