Colleen Displaced

one ordinary woman -vs- Multiple Sclerosis

On the best advice ...

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.

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