LDN

Primary progressive MS
1

Hi

I have got PPMS diagnosed since July 2011 but was wondering if anyone is on LDN? i asked my GP about it last week but she said she didnt know about it and e-mailed my ms nurse there and then, so i am still waiting

Karen xx

2

I have been taking ldn for eight years and my only regret is not starting it sooner. There is some reliable information at www.ldnresearchtrust.org, which should fill any knowledge gaps.

Let me know if I can help with any specific questions.

3

Thank you .

Just wondering if my back pain will ease and will make me walk better.

Been told today by G.P. i am on my 2nd relapse

4

Not sure ldn can ease back pain (try physio/acupuncture), but might help with symptoms and slow progression.

Why are you having relapses if diagnosed with PPMS?

5

I have physio weekly

I dont know why,I had one in march and g.p. told me again Today havent spoke to M.S nurse yet so got to check that i have PPMS or not.

6

Hi

could anyone tell me how to get LDN as GP and ms nurse will not prescribe this. I have also telephoned the LDN research but was just an answer machine, and have not yet recieved any repy from them.

7

I have just telephoned Msrc and they have given me a number to ring to get to speak to someone on ordering it . Or they can tell you where it is prescribed.

8

Hi all, I have just started taking LDN. If you want to get a private prescription, as opposed to one from your GP, go online to e-med and follow the steps required there. You will need to send them or scan and send a copy of a letter which proves you have MS. This can be from a GP or a neuro. Hth Teresa xx

9

really greatful for the advice, thank you, learnt more from people on here than off any GP, MS nurse or Nuero. Feeling more hopeful now than have in over a year.

jo x

10

Thanks for that teresa,it’s a big help going to tell my gp that I am going for it,I don’t think we have anything to lose by not taking it. Do you know if you can take it besides the tablets that you are already on? Karen xxx

11

Yes, As far as I know. E-med are pretty thorough and ask you what medication you are also on. I told my GP I was going on it as she wouldn’t prescribe it. There is nothing to lose you may as well give it a go. It is worth asking Whammel for any advice before you start taking it as he is something of an expert on LDN. Teresa xx

12

Sorry Teresa whammel?, Xx

13

Whammel is his username and he was the first one who replied to you in this post. Teresa xx

14

Thank you Teresa, sorry I’m not with it.xxx

15

Thank you very much Linda,I am thinking of taking it too see if there is some help with it. I spoke to ms nurse and she said she has some on it but my neurologist she says will say its rubbish. I am in Wales and she also said that no gp prescribes it in Wales. Karen Xxx

16

Hi everyone I have had my first order of LDN and does anyone know is it best to take it in the morning or in the night? Thanks Karen

17

Apparently, more endorphins are produced at night, so probably best to take ldn at bedtime.

However, if you experience sleep disturbance don’t hesitate to revert to daytime dosing.

18

Hi Karen I take mine in the morning as I read so many posts of people who suffered sleep disturbances and as I suffer from sleep disturbances from time to time anyway, I didn’t want to risk it. Teresa xx

19

Thank you whammel and Teresa,I will give the day a try as I don’t want to have sleep disturbance. Karen Xx

20

Hi all

i have been on ldn for a little over a month now and are a little confused of what i found so far here goes day 1 on 1.5mg woke up felt better than i had in over 3 years. day 2 not as good. The positive thing for me was able to reduce my current pain killers by over 2/3. Weeks 2,3,4 seem to be getting that little bit weaker. i am on 3mg now but legs and hands seemed to have got a little bit worse, can any one tell me if this is the norm.

Thanks

ET