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I tried ldn (4.5 mg) about 8 years ago. First 6 months it worked very well. Later
on it didn't anymore. After 3 years I stopped.

3 months ago I started again (4.5 mg) (this time on the diet and way much worse than 8 years ago).
Just in the beginning it worked. Now not anymore, but I"ll go on for at least a year.

Like the sickness itself: so individual. But just try it !! It cannot harm.

Hi Maree,
I have progressed a bit since being on LDN, which I started 4 years ago. I was already SPMS when I started. I'm a lot better than my neuro predicted though. Seven years ago he said I would be in a wheelchair soon and I'm still getting along pretty well with one walking stick.

Between the diet and the LDN I suspect I would have been held steady, if I had been better at dealing with stress. But that's another story...

Best of luck with your GP. The way I see LDN is, there's no reason not to try it. It's cheap, oral and with no side effects (except maybe a bit of insomnia right at the start). And thousands of people with MS swear by it.

Cheers, Jen
Jossi, what do you mean when you say it worked very well at the start then it stopped working? Jen
Thanks Jenpen and Jossi for your replies. Sorry to hear that LDN didnt halt your progression.
I know what you mean about stress even though I try to eliminate it. I know each time I have had
a relapse it was when I was stressed about something. Trying to be a consistent meditator.
Hi Jen,

I mean (8 years ago) that in the beginning I SOMETIMES physical felt great: I once cycled so hard, I never did before.
Sexual arousal was normal again. Hand movement was better. Those things weren't there anymore after about 6 months. This time: sexual arousal went from 0.00 % to 100 %, but just for some weeks. I think the dosage plays a major role. I tried everything that time, but almost in vane. This time I am taking ldn every 2 days. Sees if it helps (I think it is helping, but too soon to say for sure). Again just trial and error; everybody reacts differently. I think it is good to try. Cheap, almost no side effects (maybe a little bit "heavier" dreaming in the beginning). And "play" with the dosage (2 - 4.5 mg).

Thanks Jossi. I suppose I meant that you don't know if LDN is working until you've gone a few years and haven't relapsed/progressed as much as you expected. It's a leap of faith, I know. But many people claim that it stops the disease dead in its tracks.
As for feeling better from LDN, some people do, some don't. I had some bladder-related benefits. But it's for the longterm benefits I'm on it.
Hi Everyone,
Just interested to see how people who were on LDN back in 2008 -2009 are doing now,
people like Kellie, Dizzy Lisa, Jayne Crocker and bwmbagus?
Hi Maree, I find it beneficial in times of stress but don't use it all the time. By this I mean that I'll be trucking along happy as Larry, and then something worrying and stressful might happen and, if I don't get on top of the stress, some of the old symptoms start to manifest, such as bladder control and fatigue.

I often don't realise what is happening for a little while, and then it hits me and I reach for the LDN. It's not an instant fix for everything (although it does quickly help with the bladder), but I think that a combination of this and my realisation of what is going on helps me to get on top of my perception of whatever event triggered my reaction.

Then, when things are 'normal' again I stop taking the LDN and invariably find that I don't need it. When I first started to use it I was on it for a maybe a year and half and since then I have gone back to it a couple of times for maybe 2/3 months each time. I have to say that since the beginning of this year I have been experiencing some considerable stress and have spoken about taking it, but for some reason I have not, I think because the symptoms that it helps me with have not manifested themselves very much.

How about you?
Hi Lisa,
Thanks for your reply.
I am seeing my doctor on Friday to try and convince him to prescribe me LDN.
I have been to a different doctor who said she would not give it to me.
I have printed off the suggested documentation to take with me to try and convince
the Doctor.
It is really interesting to hear you can use it when you need to.
I have bladder and fatigue issues so I am hoping it will help me.
I do have to work on stress though and am attempting to meditate.
When you start taking it again do you get insomnia or anything else?
Do you think you have stopped the progression?
Maree, from what I know (reading of the experiences of many, many PwMS on LDN on forums), it would be very unusual to just take LDN "when you need to". It is recommended as a long term therapy to prevent progression of MS. It seems to me that most people don't experience much, or any, symptomatic relief from LDN.
Good luck with the next doctor! Jen
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