Forum

LDN

So I will be starting this soon after months my neurologist has agreed to let me trial it for 6 weeks, see how I do and how it helps me I’ve heard most neurologists refuse it so this is great news, I want to ask those on it hoe has it helped you?

Thanks all x

hi alysea

i took it for 2 years but didnt lke the taste of the liquid so switched to the capsules.

then the good effects stopped.

looking into it, i hadnt got the dose right - talking tiny amounts here.

i couldnt go back on the liquid because my gp hadn’t kept the original details.

i can’t explain the good effects but it was a sense of wellbeing.

good luck with

carole x

I can’t stand liquids I will ask for capsules, I was shocked my neuro said I could try it as he swears it doesn’t help msers well he doesn’t think it does, and hard to get from neuros as most is private, I want it to help bladder and bowels mostly my gp doesn’t want me on too mant meds already on 30mg of baclofen and 300mg Dailey of Pregabalin.

With the capsule form of LDN - l believe you can only get 3mg or 4.5mg - so when starting on LDN it is recommended to start with a low dose and gradually build up. So l think you might need the liquid form first. lt tastes a bit like cough syrup - and the taste soon goes away with a drink of something.

lf your financing it yourself - then the liquid form is much cheaper. l have been taking it about 8yrs now. Time flies. For me it has made such a difference. l have PPMS - so no treatment on offer. And most of the meds prescribed for symptoms do not suit me.The side-effects worse then the symptoms they are supposed to help. Baclofen/Tizanidine - Gabapentin etc left me like a cabbage - and unable to get up and move around.

l take a high dose vitd3/b12/magnesium/probiotics/D-Phenylalanine omega 3/ mini aspirin/LDN/ and l also use Sativex. l do not get any brain fog/fatigue. l try to not eat carbs as they make me so tired.

l get my Sativex on prescription - but still pay for my LDN - although the neuro is all for it. l think if l pressed my GP~ l would likely get it on repeat prescription. l rarely go to the GP - and have not seen a neuro for a few years now.

1 Like

My gp is starting me on low dose then slowly up to 3mg he said just hope 6 weeks is long enough to see if it works, then if it helps I can have more, I am also PPMS this is why I asked for it very disabled right now and my walking is getting worse I am trying to ease stiffness as this what makes walking worse.

I am on baclofen 30mg and Pregabalin 300mg gp doesn’t want me on many more beside ldn, so I don’t want to push for more I had hoped baclofen helped stiffness but not so far? Does it make legs weak or is that just the Ms?

Thanks Xx

l found that Baclofen/Tizanidine and Gabapentin made me very weak and lethargic.l thought l was going to be permanently in a wheelchair when l was on it. And l was in no fit state to drive a car whilst taking it. ln fact l could hardly have got into a car.

Do give the LDN a chance. 6months at least.

1 Like

Give LDN a few months to work as Spacejacket recommends.

I was give baclofen 60mg a day and it made me sooo weak (not ideal for a runner) now I dont take it at all now x LDN helped me with bladder/bowel issues but it effects everyone differently.

I don’t mind the taste (it’s a bit like calpol and it’s only one quick dose)!! I take 3mg as I found 4.5 mg too much to cope with (I think body weight influences your dose) so best of luck with it - it has helped me to feel a lot better.

The only thing is that I have to take it in the morning as I could not get to sleep x x x

1 Like

Too expensive for my gp to give it he feels bad after saying yes, but he’s writing to neuro as he thinks baclofen and Pregabalin aren’t helping I said Pregabalin helps with neuro pain private I’ll have to go then he thinks neuro won’t be able to give it either.