Bob, I'm trying to summon up the most "mature wisdom", (grrr!!!), I can manage, but I'm not sure there was ever a single point where the assumption was made that progressive MS is a different entity, and less treatable, than relapsing MS. There is always an "accepted theory" of any disease until it is more fully understood, and over time that theory can slide across into new areas as understanding increases. This takes time though, and often many people stick with the "old" ideas while others latch on to every new theory that comes along -- I believe that's where we are now with MS: a flood of information and research available over the internet, some of it contradictory and mutually exclusive, some appearing to disprove the old ideas while others back them up . It's like trying to do a complex jigsaw: just when you think you're getting to grips with it, someone comes along and gives you an extra piece that you didn't have before, and which changes the whole picture.
When my mum was first diagnosed 30-odd years ago, MS seemed to be straightforward: it was one disease process with different stages; like any disease, it could be worse in some people than others, and could take an unpredictable course.
Then slowly, some new drugs began to tackle some stages of MS and therefore confirm some theories. But because they didn't tackle all
the stages, and because of increasing knowledge, it became clear that there were different processes going on at different stages, or in different types, of MS. These were labelled as "harder to treat" because the pathways to things like, for example, degeneration, were only dimly understood, and also because it is easier to count the number of relapses than it is to quantify whether a continuous disease has changed its rate of progression.
Just to muddy the waters still further, the pendulum seems to be beginning to swing back -- recent research has shown underlying degeneration in all
types of MS, which points back to the first idea that it's all one disease but your body's response dictates the different courses it can take -- as I put it to Manchester or Finn recently, "It's beginning to look as if we ALL have PPMS". Not exactly a definitive answer, I know, but it's the best this "mature" brain can come up with right now
Lisabee ,Don't give up on the medical community just yet: I know how you feel because I've had some pretty bad experiences myself... there are still far too many neurologists out there with that "there's nothing we can do" attitude. You've armed yourself with knowledge, but if you decide to consider prescription medication you'll at least need a doctor to provide it! I've also encountered the "MS spectacles" that some doctors see through -- whatever you present them with, be it headache, ingrowing toenails or being hit by a truck, they will dismiss it as a symptom of MS. Maybe someone living near you can point you in the direction of a more sympathetic doctor.
Muu... couldn't have put it better myself!
W W, don't get me wrong, I HATE this disease!
Chris: congratulations on your award! Sounds to me like you're a pretty damn fine person anyway... this is just proof that others see you that way too. My step dad used to tell me that MS only affected the best people... I rest my case!
Loobie: every word you say is completely understandable -- many people don't seem to appreciate just how f***ing FRIGHTENING it can be to have a disease like this. I can remember lying in bed years ago, in the still of night, with that cold chill of fear running like ice through my veins -- "what if I get so bad I can't scratch an itch, or pick my nose, or crochet toilet roll covers, (okay, maybe not the last one). Well, that's OK; you're supposed
to feel like that, and it's people like you who take part in drug trials who will make sure that noses remain picked around the world in future,
I'd better go now before I take up ALL the bandwidth,