Okay, so further to my last posting about the trial for Fingolimod, I did
get my MRI results back. 20 freekin' Larry's bouncing around in my head and
spine now! My neurologist felt that the change from 5 to 20 over 3 years and
a new machine doing this latest scan, was a pretty average result and non too
concerning considering my physical symptoms. She could relate a lesion in my
brain stem that would have been responsible for my double vision and that wasen't
a lesion that was picked up in the first scan at the private clinic I used.
So, it's debatable if I really only had 5 lesions those years ago. Good to know.
So we talked about what I was doing for my disease. Losing 70 pounds is the
real achivement I've made to impact my total health... but isn't fully MS related.
She talked about having this early window of opportunity in making an impact
on the progression the disease can take... which of course led to ABCR treatments.
The excuse i've always given is that I want to have kids one day so I don't
want that in my system. But she feels that my age is all for me and I can stop
taking the meds if the kid decision is made. I also spotted this pic
in the MS group on Flickr. Cool. Didn't know you could keep taking any of the
drugs. So the conversation continued and led to doing a oral med instead of
injectables. And thus the Fingolimod trial. I talked to the head trial person
yesterday and she gave me a tonne of information and I feel pretty good about
doing it. The question will remain though... if I get the placebo, I won't
be making an impact on my disease in that "window of opportunity". Hmmm... so,
do I become a guinea pig for the greater good of what this new med could bring
to our community and hope that I get the med for my own selfish reasons? Thoughts