Not sure who is "fighting dmd's" exactly, fact is Mark, we don't have to. I had a phone call from an old friend back in the day, he had been talking to a mutual friend, and happened to mention about my MS CCSVI adventures, seeing that he is the one who drove me to Stanford and back in 2009, had quite a bit to say on the subject.
So said friend calls me, hadn't spoken in years, has an old coworker from the 80's, his daughter mid 30's with MS and very interested in all this of course. I spoke with her for two hours on the phone, and what an interesting case of MS, really got the sense of how unique each of our stories are, and how inapplicable one experience is to the experiences of another.
Her first experience was in childhood, had trouble with walking, was seen by Childrens Hospital in LA, and the best they came away with was her bad posture. She then was to perform certain exercises etc, and that seemed to clear things up though I did find it a bit tantalizing.
Fast forward to 96, sudden optic neuritis flareup, probable MS and we know the drill, that clears up for a time, but now into her mid 30's, what do you know? Walking issues are back, among other assorted symptoms, this around 2007, and on the DMD's she goes.
But those had so many side affects for her, including some that matched her MS symptoms, that she was left asking the question (her words not mine), "I thought these shots were supposed to help me and slow down the process, instead they seem to make things worse".
So they switched her to another drug which she is currently on, but we were in complete agreement as to the fundamental inaffectiveness of these drugs and she needed no prodding to arrive at that conclusion herself.
I've talked to sooo many, mostly in real life not the internet, and I try not to influence one way or the other, but I also harken back to not so long ago, when dmd's left me trashed and feeling like shit for an entire weekend, and that was supposed to be "good for me" at 3k a month.
So, I do consider it of utmost importance, to understand and to KNOW where these blasted drugs came from, who knew what when and how, and how relevant this info is to the average MS'er who may not understand how they are viewed in the grand scheme of things, and it is not very highly by the establishment, so therefore it IS very important to discuss such matters openly, because we may have just taken prima facie a bit too far, so yes it is always good to question. It is a good discussion to have, because it is the ONLY thing the neuros have to throw at our condition, and thats pretty scary, least when one has no other options.
We dont need to war against anything, pharma has had their day in court, and have been found wanting, CCSVI hasnt even filed a case yet, but that wont last forever.
Its not us versus them, its them hoping there may be some crumbs left over at the end.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko
, Virtually symptom free since, no relap