Friend asked me to talk with his nephew who has just been diagnosed with m.s.
Struck me very forcibly how little progress has been made since the days when I was first dx’d.
Still no cause identified and treatment vague and hit and miss.
Agree, MS doesn’t seem to me to be in the public eye. I was hoping that Coronation Street character,Johnny Connor’s diagnosis would allow for more information to be included but, unless I’ve missed it, nothing apart from he’s got it. More publicity may result in more fundraising for more research.
Just a thought!
I’ve had MS for 21 years. There’s been lots of progress made since then. When I was first tested, the doctors decided not to tell me it was probably MS ‘unless she specifically asks’. There was good reason for this. There were no disease modifying drugs available on the NHS. Until the ‘risk sharing scheme’ began in 2002. Which is when I was formally diagnosed.
There are now 13 drugs available for RR, to reduce relapses (although of course this may be about to be reduced). And more in the pipeline.
Admittedly, there are still no DMDs available for progressive MS, in particular PPMS. More needs to be done to redress this imbalance. But I still don’t think you can say there’s been no progress in the last 20 years. And for anyone diagnosed 40 or more years ago, it is a totally different world. Even without DMDs for progressive disease, or indeed a cure, there are many, many more drugs available for symptom management. I call all of this progress. Sue
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I disagree.
When I was first tested for MS in 1997, the Doctors agreed not to tell me it was possibly/probably MS, ‘unless she specifically asks’. And there was good reason for this: there were no disease modifying drugs. In 2002 when I was formally diagnosed, the Risk Sharing Scheme began and 4 DMDs were available on the NHS for RRMS.
Now there are 13 DMDs available for RR and there are more in the pipeline. (Obviously some of these may be removed from the list if NICE get their way!)
There are still no DMDs for progressive MS, and this imbalance should be corrected. Hopefully it will be in the next few years. Many more drugs are now available for symptom management.
Yes we are still waiting for a cure, but you can’t deny that life has changed completely for people with MS in 20 years. And as for those people diagnosed 40 or more years ago, the difference in, outlook and prognosis is most definitely altered for the better.
I call that progress.
Sue
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Mmmm,
I tend to sway with the others but I guess I’m basing this on my experience and my sisters.
She was diagnosed 15 year ago and it’s only now when she had 2 relapses within 6 months of each other that she was offered DMD’s.
I find it madness that you have to have a number of relapses, that the last one could potentially put you in a wheel chair for the rest of your life before being offered DMD’s.
So to me that doesnt seem like progress in terms of DMD medication if you need to play Russian roulette with relapses.
DMD’s might hold back another relapse, or reduce the risks of having another one, but thats just like saying put some glue on a leaking pipe, it might hold back the water !
You could argue that if NICE are removing meds for MS due to cost over actual benefits from these meds, then that could indicate that progress is not being made.
Maybe I’m just being too critical at the moment because I’m finding it’s getting harder and harder.
hiya
i reckon we were born 50/60 years too early! (am referring to the 40-60 year olds!)
right now its an incurable disease-that will change one day…because i do think they will address the cause rather than just treat symptoms.
ellie
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I was definitely born a good 40+ years early.
And with crappy genes.
And bad luck.
Sue
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