So I have decided for the moment i am not taking the drug the neuro recommended to me called Copaxone. i do not want to put something like that into me…kinda want to see how i get on. He said its my decision.
However i have heard really good things about LDN. Am thinking about starting it…Any people on here take it? feedback would be appreciated.
x
Hi LDN is used by many folk with MS. Some see a benefit immediately. Others take it, see no benefit, but continue taking it as it is hoped it will slow down attacks and progression of disability.
I tried it myself about 3 years ago. It did help my weak bladder and reduce spasticity. But it caused severe sleep disruption, so I gave up.
But if you do try it, I hope it helps. I doubt it can harm you.
If your GP/neuro won`t prescribe it, then you can get it via e-med.
luv Pollx
You used an important word in your question that a lot of people seem to ignore: LDN, low dose naltrexone, is a DRUG. It is every bit as much a “something like that” as Copaxone.
Somehow or other, LDN seems to have almost become equivalent to herbal remedies in some people’s minds. IT IS NOT. It is a drug.
It is also a drug that has not been tested in clinical trials and there is NO proper evidence that it prevents relapses or, indeed, do anything for MS. There is some limited evidence that it can help symptoms of MS including bladder and spasticity, but even then it does not work for everyone.
Managing our MS is our choice, but please make sure you make an informed choice.
Karen x
Hi Beccy,
Have you checked out the ms decisions website?
Not only does it have lots of info on the various dmd’s but there are also testimonials from different people who are and have been on them for some time too.
Obviously what you decide is entirely your choice but make sure that you’re well informed before making that choice - that old saying that ‘knowledge is power’ is true!!
Many people find that dmd’s do benefit them plus there’s the possibilty that dmd’s may slow down the progression of ms. For me, however big or small that chance is, I’d like a stab at it!
I’m currently on Copaxone myself - I was on Betaferon before that. Personally I’d much rather stick with what my neuro suggests and then make up my own mind from there.
It’s your call, but have a good look into it.
Mail me - you have my address
Debbie xx
As another Copaxone user, all I can say is that I wish I had started sooner.
As for slowing the progress of the disease …
It took me six months to make up my mind and say “Yes” after I was offered it. I had three minor relapses in those six months. In the twelve months since starting on Copaxone, I have only had two minor relapses. If you assume that each relapse will knock you back a little bit more, then it has slowed things down a bit.
Your body, your decision!
Geoff
Thanks guys…
Going for brain scan results today so will repost later and tell u what the neuro says.
If i do take anything it will prob be LDN over copaxone though…thats a decision ive already made.
xx