My appointment was brought forward. I was thrilled about that and yesterday headed off to see my neuro with all my research and info on HSCT.
For me, HSCT turns out to still be a 'maybe'.
So what happened?
My neuro was in fact supportive of my participation in HSCT, if I wanted it. And is writing me a referral for the Sydney trial. So I'll wait for that.
But of course I was told more about the treatment, and it's effects, and was offered examples of some results for other patients - who'd gone overseas for HSCT. I know now that my neuro has supported others on their HSCT journey. Not because of a belief in the treatment, but out of respect for the person's decision.
So it's up to me now
Basically my wishes are understood and supported if that's what I want to do. But my neurologist's advice and opinion were that, from where my MS is right now, rather than seeing improvement, I could go through all that chemotherapy involves for little or no improvement. I was told the same thing by the trial team as well. Plus if I didn't improve after HSCT, that future treatment could be compromised by having had chemotherapy - a new immune system is a baffling thing to treat.
I know a lot of people will be furious about that advice, I hear the cries of 'that's what all neuros say! they don't want to lose the money they're making from all the drug companies!" In my case, I simply can't agree, my neurologist has always supported my decisions, prescribed LDN off label when I requested it, and hasn't ever pushed me to take any drug. And now is writing a referral for my participation in a HSCT trial.
All I can say is that I'm not so sure what to do now. Quite honestly I wasn't so sure before this. I was full of hope, but not certainty.
But I asked for a referral anyway, I didn't want to walk out having shut a door to a possible better future (?). It's a huge decision. I still need to think about it. So my options are open. Who knows what I will decide?
I have had an open and fair discussion with my neurologist, and I get where she's coming from, and value her advice. But of course I still want to know that I've done everything I can to knock MS on it's head. We'll see.