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slow progressive(?) MS

Hello, my husband has been diagnosed the above MS a bit over a year ago now. After initial panicking we decided to go on LDN, and he is on 2 mg a day.

He has taken it now for 1 year. We have to pay for it, because GP and consultant think it’s rubbish.

At our last visit to consultant he advised my husband to take up to 8 Baclofen a day,“play around” , he said. So we went on 4 a day, which seems to help.

We tried to increase the LDN over the past year , but he got worse.

Now we are asking, what is helping more, the LDN or the Baclofen. Shall we try to go without the LDN, and if, can he just stop taking it or go down slowly

The medical profession are often unimpressed by ldn, but then they don’t tend to have MS either, do they? You don’t mention if ldn has been helping, but in any event there is no harm in just stopping, because the drug only stays in the system for four hours and is not addictive.

Of course, it is quite safe to continue taking both drugs if you wish.

Thanks for that comment Whammel,

we don’t know, whether it is the LDN or the Baclofen that makes him feel better. So we now have decided to stop the LDN for a few days/weeks, and see how he feels without it.

About whether LDN helped we only know one thing, as soon he went over 2 mg he started having pains in his leg. God knows whether that means anything.

We are just trying anything that is open to us to use, but we havn’t got the funds for much longer.

We tried phisio etc but it was more of efford to get there than getting bennefits out of it. 5 mins on a ex.bike sitting in an arm chair, and after that he felt worse, as in, more pains in his leg.

To be honest, we have run out of idears now, and are just hoping it doesn’t get worse too soon.

Thanks again for your reply

Best wishes

Gitte

More is not necessarily better when it comes to ldn and it’s the dose you tolerate best that counts, so 2ml is fine. It won’t hurt to experiment a bit, but I guess there is a possibility that each drug provides different benefits.

I hope you find a workable solution.

Hi Gitte, Sorry, I’m not PPMS, so a bit of a foreigner in these parts. However, I’m curious to know which symptoms your hubby is taking these two drugs for? I’m not an LDN user, and, as you’ve discovered, it’s not an NHS-approved treatment. However, I know many people do claim to have had some success with it. But I’m not sure they’re taking it for the same symptoms people usually take baclofen. Baclofen is specifically for spasticity - that is MS-related muscle tightness and cramping. It doesn’t tackle any of the other symptoms of MS (fatigue, bladder problems etc.), and isn’t supposed to. In other words, it’s not an all-purpose MS medicine; it just deals with one particular problem. I do use baclofen, and am a great believer in it. I think my discomfort and my walking would both be a lot worse if I didn’t take it. As far as I know, there is nothing to prevent anyone taking baclofen and LDN together - other than the continued expense. But I don’t think they have the same goals. As an aside, I’m very surprised his neuro cleared your hubby to go to eight baclofen a day from the word go, as it is usual to start on something like half a tablet three times a day, and work up. After several months, I am now up to six a day (three lots of two) with no problems at all. Everyone has to find their own level. But I’m very surprised your husband wasn’t almost comatose, if he started immediately at four! Tina

Hello Tina,

my husband did start with half a Baclofen 3 x a day for a few months, that was actually before he was diagnosed with MS. His GP prescribed them for his cramps in his foot and leg.

That GP went on Maternaty Leave, and he saw another one, who thank god wanted to know more about this cramping, and send him for scans. Only then he was diagnosed. He saw the Neo, who told him then, that he could take more Baclofen, up to 8. He currantly is taking 4.

As you mentioned, different people seem to react to LDN idifferently. We just don’t know, whether it is the Baclofen or the LDN that keep him “going”.

He is so far not having any other signs than the cramping. Having said that, would these symptons, as fatigue etc occur, when he stops the LDN.

Anyway, we have decided to stop the LDN and see for a few days how it goes.

Thanks for your Comment.

Gitte

I take ldn and I am on 3 ml dose and have had no side effects.

Before starting ldn I was taking Gabapentin, Pregabalin and Amitriptyline for pain and spams in the legs. Since being on the ldn all the pain and spasms have stopped. I agree it does not work for everyone. As you say try and eliminate the problems by not taking one drug and then maybe try stopping the other one for a bit and try again with the ldn.

It worked for me and I have not looked back.

Good luck C x

l take LDN - and have for 3yrs - and my spms has not progressed during this time. l feel so much better for taking it.

l did try baclofen and tizanidine - and they made me feel dreadful - so weak and wobbly - so my GP said to stop it.

l find taking magnesium very helpful for pains/cramp in my legs. ln fact Whammel answered a post on Everyday Living with a very useful link about magnesium/vitd3/ms.

F.

Hi everybody,

well, we tried without LDN for 3 days and Peter felt so much worse. So back on LDN. Thought, we give it a while to stop the Baclofen now, see what happens.

Thanks for all your replies.

Gitte xxx

Glad to hear that you have identified ldn as being beneficial, and so quickly too. I hope the rest of the experiment proves to be just as useful.