Petition to make Low Dose Naltroxene available to MS sufferers on the NHS throughout the UK

An59 only other non LDN post you have made here was on Pregablin where you would not even take them over your ommitted fear of side effects.

You say you have all the MS symptoms, I can’t help wonder what symptoms you would have today if you was on say Rebif.

Your shoving LDN down peoples throats like you have just got back from some Pyramid sales course and told to sell sell sell.

Why would anyone who is RRMS in their right mind risk permanent damage and suffering and not take a DMD and only LDN

Why do you feel the need to try and scare people off DMD’s when it’s factual they do deal with MS unlike LDN?

Many MS people all have Thyroid issues did you ever wonder about that and LDN and other medication interactions?

Most DMD’s are actually not toxic in the sense of a chemical anyway they are biological, Interferons made from e-coli and hampster ovaries, Tysabri is biological also.

MS is not some mild stifness you can take a mild muscle relaxant soldier on and hope for the best, it’s a disease that will screw with your whole life and can land you in a wheelchair or worse with other complications, So I will listen to all the MS neurologists and bio chemists who has spent years understanding this disease and not take any advice from someone who spent a few weeks in a brainwashing facebook group.

  1. se LDN blocks opioid receptors throughout the body for three or four hours, people using medicine that is an opioid agonist, i.e. narcotic medication — such as Ultram (tramadol), morphine, Percocet, Duragesic patch or codeine-containing medication — should not take LDN until such medicine is completely out of one’s system. Patients who have become dependant on daily use of narcotic-containing pain medication may require 10 days to 2 weeks of slowly weaning off of such drugs entirely (while first substituting full doses of non-narcotic pain medications) before being able to begin LDN safely.
  2. Those patients who are taking thyroid hormone replacement for a diagnosis of Hashimoto’s thyroiditis with hypothyroidism ought to begin LDN at the lowest range (1.5mg for an adult). Be aware that LDN may lead to a prompt decrease in the autoimmune disorder, which then may require a rapid reduction in the dose of thyroid hormone replacement in order to avoid symptoms of hyperthyroidism.
  3. Full-dose naltrexone (50mg) carries a cautionary warning against its use in those with liver disease. This warning was placed because of adverse liver effects that were found in experiments involving 300mg daily. The 50mg dose does not apparently produce impairment of liver function nor, of course, do the much smaller 3mg and 4.5mg doses.
  4. People who have received organ transplants and who therefore are taking immunosuppressive medication on a permanent basis are cautioned against the use of LDN because it may act to counter the effect of those medications

Not signing because I’m not British but has it not occurred to you that it probably hasn’t been made available on prescription throught the NHS precisely because you can get it so cheaply? Why do you need it to be Govt subsidised if it costs so little? Or am I missing the point?

Here’s a sensible suggestion An59. Try LDN, wait for 3 months and the post about whether it’s helped or not?

I too was/am an LDN advocate. It was excellent for my bladder symptoms and I got to sleep through the night. It doesn’t work any more, which is a shame as I can get it easily and cheaply. I live in Spain, where LDN doesn’t exist as a drug, so made my own from Naltrexone - my only option.

You can take alongside DMDs. Someone here takes it with Tysabri.

I have been on Rebif since 2000 and it has worked very well and without side effects.

We have been through the petition/discussion issue here many times. LDN is not without side-effects. Occasionally, these side-effects can be far worse than most DMDs or other symptomatic relief.

Many board users have tried LDN and I’d have a look at the PPMS/SPMS board here to read more.

Try it. Don’t expect miracles and please, if you are offered a trialed, proven DMD, don’t turn it down without a lot of thought. It may just save your mobility.

I had a very, very bad relapse on LDN alone. I won’t make that mistake again. It robbed me of 9 months of activity and good quality of life.

K

l have been taking LDN for about 6years. For me - it has made a big difference to my life. lts now 32 yrs since l was first diagnosed with SPMS - so never had the chance of dmd’s. LDN boosts endorphins - makes me feel more positive and more able to cope with MS symptoms. Recently, l had to stop taking it as l have had total knee replacement - so morphine/codeine prescribed which means l could not take the LDN.

Shall soon start again once l have stopped taking the codeine [opiates] - l shall start again on a low dose 1.5 and gradually increase it.

There are more and more GP’s prescribing it now -which is encouraging. But as already pointed out - it is inexpensive to purchase.

For me, l certainly wished l had known about it years ago, because it has helped me with increasing my energy levels so l can exercise more easily. Stopped the ‘brain fog’.

l have felt rather low the last couple of months - which l imagine is the effect of major surgery combined with having to stop the LDN.

l also have been taking MSSentials supplement for MS. lts a combination of nearly 40 vitamins/minerals/amino acids recommended for PWMS all in one -rather large tablet. These l had to stop taking 3 weeks before surgery - but have started again now.

An59 - Do try LDN - and it can be taking alongside dmd’s. Like many - l will not take anything that causes nasty side-effects. We have enough to put up with - so l stick to meds that actually do make me feel better.

Signed and shared on facebook. Can’t hurt! Might help… :slight_smile:

Just an update to say I received my first prescription of LDN yesterday, which was very simple and straightforward. I will be happy to post how it will affect me over the forthcoming days/weeks.

It’s now been over a month since I started taking my Low Dose Naltroxene medicine.I have to say that after the first 3 days I was so shocked to find that my right hand (which has been numb for 2 years) suddenly gained feeling in it again.

To this day it’s got normal senses back in it .That was just by taking 1ml dose of the liquid! I stayed at the same dose for 2 weeks and then slowly increased it to 1.5mls.That’s where I’ve stayed.Everybody is different with it and it’s trial and error how much to stick to (but no more than 4mls).I stopped the Gabapentin I’d been prescribed for cramps after the first week, as I’d reduced it to 100mg per day. I had no side effects,but was told I could have continued using it alongside LDN. Instead I looked into how I could deal with the cramps and spasticity in my feet and legs. It was suggested by users of LDN, that I take Magnesium and vitamin D tablets, also eat a Banana a day. I’d also read you could put a bar of bath soap under the cotton sheet near your feet, and it would help. I can happily say that I’ve not had any night cramps for weeks! This is after suffering them for over a year.

I’ve signed it and left a comment. I will also tell others xx

…and shared on Twitter. Let’s get it trending :slight_smile: