When will it be our turn?...

Hi folks

When will it be our turn???Good news about RRMS - ‘Alemtuzumab: potential new drug for relapsing remitting MS’

BUT when will it be our turn?

Any way have a good weekendM

Yes, I said something similar on EL yesterday M. Surely someone will find something for us soon? Take care, Teresa xx

I do hope so girls!

luv Pollx

Hope they come up with something soon eh? They do seem to do a lot more reseach on progressive MS these days, but I notice much of that is for SPMS.

Is it because we are a much smaller group?

Is it because we are generally in older age group?

I think the cause of PPMS might be completely different to RRMS and there might lie the secret.

Pat x

Hi Pat, You could be right. I read something over the weekend and I can’t remember what it was but it said that the best results for treatment could lie in treating PPMS very early. The problem with that is that no neuro will dx you until you’ve had it at least a year and my symptoms were quite mild for the first four years so I didn’t see a neuro until about 4.5 years in. By then, it was well established! Teresa xx

Hi All

Don’t have an answer to that one, I think we are the forgotten few.


But so very specialM

I had for 8 years before diagnosis, so that’s me stuffed in the early diagnosis bit! Plus I am young (37) for PPMS. I think age is irrelevent these days!

That is young, a cruel beast of a diseasetake care, M

That is very young for PPMS… but doesn’t mean it will progress any quicker. In fact some PPMSers reach a stage where it stops progressing or even improves.

Pat x

Yes, it is young for ppms, but I was 29 when it all started (some 30 odd

years ago) …jeez that makes me feel old!

My progression has been a slow steady decline, and although neuro told

me “the cure is just around the corner” and "usually after 10 - 15 years you

will plateau", I am still waiting for both to happen!! but I am still here.

Pam x

hi m

ms matters this month has whole edition dedicated to ppms

research,funding,etc worth a look


Thanks Steve, I was heartened by the thing - there is hope, I think its just round the cornerM

Whatever happens, you can all share my slogan

I may be broken, but im still here`

luv Pollx

A lot of the drugs for RRMS are aimed at reducing the severity and frequency of the relapses, in an atempt to make them more manageable. They do nothing towards curing the underlying cause.
So withouth the relapses, there is very little for them to target and hence very little out there to help us, drug wise.

In truth, all people with MS, regardless of time are waiting for an actual cure, not just something to help ease the condition.
I am heartened about the discovery of something that may help with the repair of the myelin, that could be a big step forward for all of us.


Like M, I’m hoping that that cure is just around the corner. Am also hoping it will plateau and sooner rather than later. No sign yet but you keep on going, don’t you? Teresa xx

It seems like one of those never ending corners at the moment.
i think I have hit a bit of a plateau, thanks to the LDN, i hope it lasts.


If it helps anybody … I have had PPMS for 26 years now (diagnosed at 26). Although in a wheelchair, I still work part-time, drive (from the wheelchair) and don’t have a carer yet. Today’s post re Amiloride and Phenytoin was potentially good news as it sounds as though they could potentially halt further progression … ? (And it may be available sooner rather than later?).

Debs x

Yip! There is hope