Take a look at these… click on the ‘about’ links for the 2 new drugs. If you belong to MSS you would have got the info through post today. Looking good!!!
https://mssociety.netdonor.net/ea-action/action?ea.client.id=1692&ea.campaign.id=17116
Also, esp for our new users, read the post by Debs (Munchkin) on the ‘When will it be our turn?’ post.
26 years of living with PPMS… Thanks Debs, you are an inspiration.
Pat x
Hi Pat
lets do hope that the drugs will help us ppms,s l did wonder why l had to send them £10 if the drugs are out there why carn t we have them. Regards Jan x
Fingers crossed everyone. I hope they can help and will be available soon! Teresa xx
When will it be our turn? Maybe just around the corner… The treatment if out there, it’s treatment we are waiting for rather than the cure!! If the drugs don’t do any harm WHY not just go for it?
Take care folks, M
hi pat
had letter yesterday and very positive
steve
Hi all
Had the letter last week as well.
If the drugs are already there for patients who have high blood pressure and patients with epilepsy they must be given them by their g.p.
So hopefully they will give them to us sooner than later.
Karen xx
That’s what I’m thinking Karen. Surely they’ve already gone through loads of safety tests?
Here’s hoping,
Pat x
Yes pat exactly what i thought too.
I have an appointment with my G.P. and M.S. nurse tomorrow so will ask them about the drugs and when will we be able to have them.
karen xx
Hi
My neuro has given me amiloride to try and says that the cost is minute. Said to take in morning as it may make me pee more!
Thats good Stevie at least we know its available.
Perhaps more neuros and G…P.s will prescribe.
Karen
Very interesting Stevie. Seems like some neuro’s are prepared to go with it before trials are done with. Good on 'em!
More trips to the loo though… may as well set up a telly in there!
Pat x
Im really lucky. My Neuro is really a fantastic man and I believe an expert in MS.
I wish i could offer a high monthly donation for this… Finally some hope though.
We have literally bottles of phenytoin at home for my dads epilepsy, he is on 6 a day. It is a widely available drug that has the benefit of already having gone through extensive testing so hopefully that cuts down on the cost needed to fund this research.
Fingers crossed xxx
i feel i have missed out on this what is this new drug please?
how is it meant to help us ppms sufferers?
please pleasse tell me it helps balance and walking!
i am on 2.0 of ldn at moment fantastic for fatigue and mood but no improvement in balance and walking any advice please x
is anybody out there taking anything that has improved their walking if so pleeeease tell me wat!
kind regards
lozzie x
Hi Lozzie, the new drugs look as if they can slow down progression of PPMS.
I’m sorry to say there isn’t anything for balance and walking yet. Have you tried physio? It helped my balance and with better balance my walking was a bit better. They give you exercises that help balance. See your GP or neuro for a referal.
I also find using a walker helps… it’s much steadier than just using a stick. I keep meaning to try forearm crutches as some people swear by them. Again, GP can refer to OT department.
I’m glad the ldn has helped fatigue and mood… sorry it’s not helping balance and walking.
Hope the ldn continues to improve things for you and that you can get some physio to help.
Pat x