Last reply 1 week ago
Advice and tips

I got diagnosed 5yrs ago this Christmas with ppms and all I keep getting told there’s nothing out there to help slow it down. So I’m just asking on ere to see if anyone knows any different. Thank you if anyone can help.

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edmontonalberta
1 week ago

@jaylee

My neurologist told me there are 4 types of MS; Three progress like walking up stairs – PPMS progresses as if one was on an escalator.

It is as if PPMS never stops – whatever the angle of the escalator. If it rises slow, the progress is slow; if quick – it remains quick. Having said that, he also said Ocrevus might help. Yet that drug has been been approved in Canada & it has not been prescribed for me.

He did set me up with another MRI six months from now; which puts me on the lifetime waiting list (one MRI per year) so he continues to collect his paycheck… LOL


stumbler
1 week ago

@jaylee , the only present drug for PPMS is Ocrevus, but this is not presently approved for use on the NHS.

This decision is being reviewed, but the review will not conclude to sometime next year.

There are other potential treatments in the pipeline, so we live in hope.


vixen
1 week ago

Hello @jaylee, I really believe that in the 21st century, hope is not at all unreasonable. I think there is lots of potential with all the remyelination research. In the last few months, we are even watching on TV several paraplegics slowly take their first steps with the aid of technology and implants. Who’d have thought? Keep strong…..x


watsoncraig
1 week ago

3 years this week (PPMS) for me. I noticed a change in the last 12 months, I want the choice of O


jaylee
1 week ago

Thank you all for replying to my question fingers crossed for the nhs excepting ocrevus on prescription next year

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