Great write up for your experience meeting with Burt in Chicago. No doubt he is a great doctor. And sounds like Burt is correct in identifying your MS as rapidly progressing (since you've only been diagnosed for a year). So the good news about HSCT is that it is "most" effective in cases such as yours.
If you are able to be accepted to this phase III study (quite difficult with very narrow inclusion/exclusion criteria), good possibility that your insurance will spring for the cost. The unfortunate part (as you already know) is that you have a 50% chance of being assigned to the control arm in which you don't receive HSCT. If you end up in the control arm the drug regimens are not risk-free having already demonstrated some patient fatalities (and also they don't work nearly anywhere as well as HSCT). Although I'm not bad-mouthing these drugs and I would have seriously considered using them if they were available when I was first diagnosed with MS 16 years ago. Fingolimod = possible heart muscle failureFingolimod safety review launched over heart concernshttp://www.pjonline.com/news/fingolimod ... t_concernsTysabri = possible PMLBiogen reports 10 more Tysabri PML cases, 4 deathshttp://www.reuters.com/article/2011/02/ ... 0320110218
Luckily, just like all other MS'ers that undergoes HSCT, I no longer need to take any MS drugs of any kind anymore since HSCT effectively stops MS and likely results in substantial reversal / improvement of pre-existing symptoms.
There is a silver lining to being assigned to NWU's control arm. If a patient's EDSS worsens by one point in one year during study participation, then the patient can cross-over to HSCT treatment, as described by Dr. Burt in this video (start watching from three minutes in):http://www.youtube.com/watch?v=msYTOSo4 ... re=channel
But of course in the end, you want HSCT as soon as possible that is FAR superior to conventional drug therapy to cure your MS. You always have the option of paying for the treatment outside of a trial if you can raise the money. $150K in chicago, $40K in India, 50K Euros in Germany:http://themscure.blogspot.com/2011/06/g ... -have.html
Wishing you the best of luck.