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LDN - Thoughts/Experiences please.

Hi Everyone

Haven’t been on for a while, but was wondering what people had experienced with LDN? All comments/thoughts welcome.

Many Thanks

FB

I asked about LDN when I saw my neurologist earlier this month and was shot down by my MS Nurse who had recently returned from the USA and said there was no evidence that it did MS any good. My argument was that they had been using it since 1985 in the states and in other countries but she kept on about what she knew.Not only is it a lot cheaper than other medication, it has a lot less side effects from what I’ve read. I know it has only just started being used in most parts of the UK so maybe next time I see my neurologist he and I will be able to discuss it more and I will do more research on it. I too would like to hear about anyone else who knows about it or is on it.

Hi Chewitt 14 Thanks for replying. Your experience appears to be the norm, but to be honest the more I research it, the more evidence I find that it is well worth trying. This website really helped - LDN Research Trust - full of great information and advice, well worth checking out. If my GP does not prescribe, I will be going down the private prescription route - but even then it is a fraction of all other MS meds - plus no known side effects - so in my book it’s well worth it. As you say though, would be interesting to hear from others on this. Cheers FB

PS. A book well worth reading is Up The Creek With A Paddle (Beat MS and all Autoimmune Disorders with LDN) - by Mary Boyle Bradley. Fabulous book!

I’m on liquid LDN 4M/L and I seem to be keeping fine on it - I get a private script from my neuro and it costs £18 per month…I also inject copaxone daily (it’s one of the dmd’s that you can take LDN with) It’s one of these things - better to try everything with MS and if it keeps me mobile and sane…so be it…

Hi Redman I am also currently on Copaxone, but to be honest I would rather not be using it at all - I am hoping to use LDN alongside OMS Diet, Meditation & Exercise. I want to take complete control of my MS in the least medical way possible, and I’m hoping this is going to be the way to do it. Feeling pretty positive! FB.

I’ve been on LDN 2mg for ten years. Sorted out bladder problems and dulls painful legs. Told my GP I was taking LDN (private script) and he offered to prescribe on NHS. If I miss a dose the old symptoms quickly return, so I know it helps.

Some people find that LDN helps with symptom management although not everyone does.

Unfortunately LDN is not a substitute for DMDs e.g. Copaxone. I personally would not be willing to risk the consequences of not taking DMDs if they had been prescribed.

Hi Johnh & AnnieB

Many thanks for your replies.

Johnh - Do you take any DMDs alongside LDN?

AnnieB - I do totally get your point, but just feel that I won’t know for sure if the LDN is working or not unless I at least try it on it’s own.

FB

How do you go about getting LDN? I would like to try it.

Hi haziebabie

I am asking my GP about LDN tomorrow, but do not hold out much hope for a prescription, so I will probably be going down the private prescription route. All the information is on www.ldnresearchtrust.org - well worth having a look at this site as it has a lot of information on, including private prescriptions.

FB

Been doing a bit of googling myself and will try with my GP on Friday. This link was really useful. http://www.ms-uk.org/choicesldn

I’ve just registered for a private consultation, just planning ahead in case my GP says no, which I am expecting! Just checked out that website haziebabe, looks good, thanks. A great read is Up The Creek With a Paddle by Mary Boyle Bradley - well worth a read. FB

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I havent tried ldn, but from reading this forum for the last 2 yrs I know there are some regulars who have or are still taking this. The only thing I can add is that people definetly still relapse on this. People can see great improvement in symptoms too, but it is not a dmd. I havent written off trying thisat some point but I am aware that it is not a cure to ms. Zoe xx

I used to take LDN. I started it in 2009 and stopped taking it last year. I have been on Rebif44 since 2000.

I moved to Spain, ran out of Rebif, assumed I was SPMS and took LDN on its own. I had a massive relapse some 5 months later and spent 2 weeks in hospital and I needed a lot of physiotherapy after my hospital stay.

I restarted Rebif (with grateful thanks to the local neuro) and then restarted LDN. The benefits from the LDN were - less spasticity, much better bladder control and sensation, lovely night’s sleeps and a sense of well-being.

The LDN stopped working a couple of years ago, unfortunately.

The nice thing for me, is that the Rebif is still doing what it’s meant to do. I didn’t expect this and I know I’m lucky.

If you have had relapses, then please do be very careful about taking LDN on its own. At my last neuro appointment in the UK in 08, he did warn me that LDN wouldn’t stop relapses. He was right.

very best wishes,

K

Hi Zoe

I know that a relapse is still a possibility - but I wouldn’t necessarily say it’s a definite. Even on DMDs a relapse is still possible.

At the end of the day it is a very personal choice really, but I think this is really worth a shot.

FB xxx

l have ~PPMS - 32yrs now. Never had remissions - and never been offered dmd’s. 6yrs ago - l started LDN - and have had really good results. Do get mine via Emed - but as you say it is not expensive. l think it only took a week to get the private prescripton set up and delivery from Dicksons. More and more GP’s are prescribing it now. For me - it gives me a positive outlook on life - makes it easier for me to cope. Certainly less fatigue. More upbeat.

Recently, l have had a total knee replacement op. This meant l had to cease the LDN before the op and for several weeks after - as you cannot take it alongside codeine/morphine/oromorph. When l started back on it - l did have to go back to a starting dose of 2ml- which l have now increased to 3ml. Soon l shall get back to the 4.5ml. lts only now that l realise the difference it made - l was feeling really down after the surgery and having difficulties in getting about. Now back on the LDN - everything is easier. My MS has not progressed since l started taking it - just wished l had known about it years ago.

You will need a letter signed by your GP - confirming that you have MS. They can’t refuse you - but they might actually charge you.

The best way is to ask you GP - in person to write it. lf they ask the receptionist to type it out and then they sign it - you could be liable to a fee. A lot depends on your GP.

Now l hate the side-effects of many of the meds that are precribed for MS - we have enough to cope with - why make our lives worse.

I’m a likely PPMS’er too and have found it worthwhile. I only takes 2.5ml as that suits me. It’s not a cure all but side effect wise, it is so much nicer than all the other pills & potions that have been sent my way since diagnosis! Sonia x

Thank you guys, getting some good feedback here which is brilliant! Seeing my GP tomorrow, but have already spoken to a Doctor in Glasgow re a private prescription if necessary - he’s calling me back hopefully on Wednesday. He’s advised me to be using LDN for at least 2 months before deciding whether or not to come off Copaxone, and if I do, I should keep my Neurologist updated - but to expect my Neuro to be pretty shirty about the whole thing! Not really a surprise!

You don’t think your neuro may be shirty because he has concerns about the effect on you of your decisions?

I take it you have read http://www.mssociety.org.uk/ms-news-and-research/ms-research/potential-treatments/emerging-areas-of-research/ldn.

I would draw your attention to this sentence and particularly the report that it links to

In autumn 2011, following a resolution at the AGM, the MS Society carried out a review of the evidence for LDN as a potential treatment for MS.

The conclusion of the report is:

  1. Conclusion
    There is virtually no published clinical evidence to support the use of LDN in Multiple Sclerosis. What evidence exists is exploratory, conflicting, and does not include adequate end points. Repeat of the pilot studies should be considered before any further work was done, and/or there is a need to define what would constitute a reasonable “proof of concept” for phase II studies.

However it seems to me that @Missylala you’ve already made up your mind and are looking for people to agree with you.

Good Luck!