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stumbler
2 months ago

@highlander , the criteria for Ocrevus for PPMS is pretty restrictive being early onset only really.

SPMS is a different beast, as we transitioned having had RRMS first, so we’re pretty far down the path.

There may be some benefit for SPMSers, but it won’t be on anybody’s list of priorities to find out.


highlander
2 months ago

@stumbler
Thought it would be something like that…Ahh well short of getting a rewire it is what it is!
Thanks


vixen
2 months ago

@highlander, there is a promising medication looming on the horizon which is hoped would benefit SPMS folks, so take heart, keep hoping and stay strong x


highlander
2 months ago

@vixen
Thank you.
You’ve had a pretty busy day!
Fantastic Job well done!


stumbler
2 months ago

I believe that Siponimod is the looming medication.


wobbleone
1 month ago

@highlander
Wonderful that this drug is now available.

Interesting question from you or perhaps disappointing question for me ….
I am diagnosed with RRMS but don’t meet the criteria for DMT … my neurologist when saying it was RRMS, muttered that this doesn’t mean it won’t change to SPMS.
I had though recently oh well, at least I can then get this new treatment..
But it would appear not.
I wonder about the definitive diagnosises ( is that a word ? 😬)
… if I was still undiagnosed and was getting progressively worse and then got diagnosed would it be PPMS or SPMS ?


highlander
1 month ago

@wobbleone
I’m afraid I can’t answer that one for you..sorry.
Speaking for myself though I’ve had problems on and off for years and it was blamed on over work, stress, pulled muscles, viruses and the common cold amongst other things.
Sound familiar?
Now I’ve been told I have ms 100%
But what flavour of MS is still to be officially written in stone.
One Neuro says spms the other says rrms. What’s a boy to do?
So after my wife took control of the discussion and backed them into a corner (she makes the best lawyer’s look pathetic) I’ve got in writing a dx of SPMS with relapses.
Which keeps the options for DMTs open for a little longer.
I know that I’m becoming gradually worse. But hopefully because of the TEC it may have slowed it down and left it smouldering rather than raging as it was before.
Better to have loved and lost than to never had.


wobbleone
1 month ago

Its good that they kept your diagnosis kind of open from a treatment perspective and great that you’ve got your wife to fight your corner.

Your story sounds very familiar…I think your previous doctors went to the same school as mine 😅 ..

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