LDN and neck pain?

Everyday living
1

I wonder if any of you who are taking LDN can help me with this? I’ve been taking the LDN for just over a week, I’m still on the first dose of 1.5ml per day. A couple of days ago, my neck became very stiff and it still hurts to turn my head. I feel fine otherwise, I don’t think it’s a chill in my neck because I was wearing a poloneck and a jumper when it started, and I haven’t been doing anything else to warrant this pain. Could it be the LDN?

Thanks

Luisa

2

I have honestly not heard of this problem being associated with ldn use before, but guess you could try reducing the dose, or take a couple of days break and see if things improve.

Hopefully, you will get to notice some of the benefits soon.

Changing the subject ever so slightly, do you happen to know the delightful Ann McRae of Aberdeen?

3

It is very very unlikely to be LDN indeed it is almost certain you will need to go up to at lease 3 Mg before you notice any effects of LDN good or bad. That is the whole point of the slow build up system of dose setting for LDN, you can notice if you have any adverse effects and back off the dose if you do see problems.

Generally LDN acts as a pain suppressant as well because it boosts endorphins although it seems less certain that that is the entire story of how it works to stop MS progressing. Least that is what I have taken from the medical conferences that I have attended in recent years.

4

Thanks folks, I couldn’t find the answer on the web (not the best at using search engines!). My neck is a bit better today, so that’s good.

Whammel - I have met and spoken to Ann a few times at the MS Therapy Centre, but I haven’t seen her for a while.

Luisa x

5

Hi Luisa

Sorry to hear about your neck pain, I’m sorry I can’t help with that question, but I think you have been given some good advice on how to deal with it. However

I would be very wary of some things that you read on the Internet, not all are true.

I am not sure where the critical value of 3 MG has come from, I certainly know of people who have experienced unpleasant side effects on less than that dose.There is no scientific evidence that LDN stops MS progressing, despite what some people would like to think.

By the way I am not anti LDN, there is no doubt that it has helped some people. However there are some wild claims made for it.

I hope you find relief from your pain soon.

6

Hello Luisa,

Thanks for the reply about Ann and hope she is doing ok. I went sailing on the West Coast with her and some other MSers a few years ago and suddenly got all curious.

Good news that your neck pain is easing and hopefully it will clear up soon.

7

The evidence that LDN stops MS progressing comes for the medical conferences where doctor speak of their experiences treating patients. I suggest you listen to Dr Bahari’s talk at the 2005 US conference as a starter.

Again from the conferences you will learn that most people require a dose of between 3 - 4.5 Mg to get the desired affect. However since we are all different then some do need more or less than this amount.

I agree unreliable information is everywhere including the Internet. However I feel the most reliable information come from practitioners experience with any particular therapy. We are fortunate that most of the talks given by doctors at the various LDN conferences is still on line, so can be listened to by all who wish to hear what they have to say.

One of the many points made by the 2005 Heath Committee report ‘The Influence of the Pharmaceutical Industry’ was that clinical trial are a poor indication of clinical experience mainly because clinical trial do not represent real life. Many other useful points were made and I would suggest it represents one of the most authoritative comments on modern drug treatments and should be read by anyone who thinks the current system is primarily based on science.

8

Thanks again for all your replies and advice - regarding believing everything you see, I am a reasonably intelligent woman and I do have quite a sensitive bs radar. I realise that LDN does not work for everyone, and it is far from being a cure, but I wanted to give it a go seeing as I’ve been on beta interferon for 8 years now and my condition is slowly getting worse. I’m going to follow the advice from e-med and the prescribing chemist about dosage and see how I go with it. If it doesn’t work, then at least I’ve tried it. I also think that on these forums, there is a wealth of experience available from lovely people like you who answer daft (and maybe not so daft) questions from people like me, and I don’t have a problem asking for advice - what I do with the advice is then up to me.

Luisa x

9

Thought I’d add in an update - after 2 weeks of not being able to turn my head more than about 15 degrees in either direction, I decided to take a break from the LDN to see if there was any improvement. I’ve stopped it for 3 days now and can turn my head almost 45 degrees to each side. My neck is still sore, but much much better than it was. I’m going to restart the LDN tonight, but with only 1ml and build it up from there - my neck started being sore at the end of the first week on 1.5ml, so I’m hoping that starting again with a lower dose will allow me to reach the optimum level without too many problems.

Thanks for all your replies on this subject,

Luisa x

10

I’ve been thinking about this, so it’s just as well you popped up again! I’ve not come across any reported relationship between LDN & neck pain before and can’t help wondering if maybe it’s something simple, e.g. were you worrying about trying LDN and so tensing up?

It’s often difficult to identify the cause of these problems, but here’s hoping the neck pain stays away this time.

Lolli xx

11

Thanks Lolli,

There is a relationship between LDN and muscle pain - I did wonder if I was getting spasms in my neck, I wasn’t worried about trying the new drug, so it’s probably not stress related. Frustratingly, I think that it’s a bit worse today after taking 1ml last night, but I’m determined to persevere with it. I have an appt with my GP tomorrow, so i’ll ask him about it too.

Luisa x

12

Don’t hesitate to reduce the dose to .5ml if necessary, as it looks like you would benefit from an ultra-slow introduction. Only increase when this amount has been tolerated ok.

I hope the neck pain improves soon.

13

Thanks Whammel, I was thinking I should probably do that tonight and see how I go tomorrow - I’ll also ask the GP what he thinks

L x