I have agreed with this a long time, even though I have been in a 2-year RCT (which, including wash-out for 6 months and a delay after the wash-out, was really 3 years). The drug didn't work, and the trial made people cry because they were having disease activity, and didn't know if they were on placebo or not. They wouldn't quit the trial because they thought there was no other hope. I was on placebo, and I suspected that from the first saline infusion. If I hadn't been "SP" before the trial, I certainly was when it was un-blinded. By then I was in a wheelchair. I was treated with cortisone for a relapse, during the trial. But still I could not be "Relapsing-Remitting". I think the subtypes are a matter of convenience, and not to patients.
Baselining should be much more prevalent in clinical treatment of a disease that is not understood, particularly when starting or changing drug therapy. When I was on Rebif, my GP tested my liver enzymes and found them high. I could not point to a baseline test to be sure the Rebif was causing it. I have not seen much testing, beyond what is necessary to get FDA approval to sell something new to "RR" patients. I have always thought that if the disease were being fundamentally "modified", my foot paralysis, and other symptoms, would still be affected by treatment, even during or after a change of subgroup. I think it is too easy to just blindly recite the mantra that these drugs won't help you anymore. You are faced with the same Catch-22 that you faced when you were called "RR". How much worse will I be if I don't take it? They can't tell you that, either, but they won't give it to you anymore, so it becomes moot.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience