Last reply 6 years ago
LDN

HAS anyone tried ldn who has PPMS?
I’m sick of the fatigue and leg spasm/stiffness. Baclofen doesn’t help.
Feedback gratefully received

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mima
6 years ago

No idea what LDN is, so haven’t tried it, but I use Modafinil to help with the fatigue, and Sativex can help with spasms. Have you tried talking to your neuro about this and what have they suggested?


karenmoore
6 years ago

hey, I have never tried LDN so can’t speak from experience but I have read lots about it and its benefits. I’ve got RRMS and want to give this new drug a shot. From my experience NHS nuerologists don’t want anything to do with because of the lack of clinical trials and it’s compatative cheapness (not money for the drug companies!) but I have been able to get an appointment wiht a Dr privately who prescribes it. I will keep folk posted if and when I start on it. Good luck in your attemps to try it and especially with finding something to help the fatigue.


nomad
6 years ago

thought i would give it a try,spent lots of time watching videos on you tube. but after 2 months nothing happened you will find more info here lowdosenaltrexone.org


roni
6 years ago

Since your post I’ve been checking into LDN. Seems to me like an answer to a lot of our prayers BUT it’s still not readily available here which I think is shameful. I would really like to get involved with either a pressure group or some kind of petition but I haven’t been able to find anything current. Anyone heard of anything.


loulou
6 years ago

Hello Paulecock!
Im surprised Baclofen does not do anything for you, I wouldnt be without it, relaxes my legs and gives me a great nights sleep
I also take 1 three ml LDN at night and have PPMS, I feel it peps you up a bit and it definitly stopped that “wanting to go to wee” bladder problem
You have to get a private prescription and its not cheap but you can try to get it funded
LDN is liscenced in lots of other countries and has been for years, it is a safe drug and really worth trying but give it at least a few months trial
If any of you have a bladder problem then try………LDN……… xxx.

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