Ataxia UK
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The knot in my rope of hope

Firstly, would just like to say thanks to everyone on here for the helpful and sometimes silent support you have given me over the last year. Which has been terrible, frankly.

I have secondary progressive MS, but after a few bad falls earlier this year, was told I also had cerebellum ataxia. The neurologists advice was to carry on what I was doing and to steer clear of the ‘dirty drugs’.

But the reason I went to see her was because I couldn’t carry on with ‘what I was doing’ I couldn’t really do much and when I did do anything, I fell or exhausted myself.

My quality of life this year has been 0.

I am only 43, with two children - who have had to spend a lot more time with their father and his new gym bunny wife. (Obviously, I was traded in when my MS got worse- but that’s another story - u certainly find out who your true ‘friends’ are)

So I have struggled on, feeling like death tbh - even a tough ole scouse bird can’t thrive in the circumstance I found myself in. Up until a few weeks ago, I was housebound, (adult social care round here is non existent- they don’t want and don’t have the funds or morality in my experience) felt sick all the time, couldn’t walk one step unaided and was in immense pain Daily. As well as bladder issues, breathing issues, eye issues, regular choking and speech changes...and seizures that would knock me off my feet with uncontrollable shaking etc...I was ready to throw in the towel - because nothing I did made it any better and the daily grind of existing really had worn me out.

I happened upon some information about fibromyalgia and it sounded as horrific as the things I was experiencing. I watched a programme about motor neurone - she wasn’t in as bad a state as me... so in desperation I decided to try LDN.

I’m 4 days into taking it. I have walked upright for the first time this year. I have got my appetite back, my speech has improved, my cognitive function has all but returned, my son commented ‘I think that medicine is working y’know- you havnt shouted at the telly all week..’ out of the mouths of babes...

I’m not as mortally depressed, I have actually experienced sublime joy at being able to get the wheelie bins out!

The changes so far are small, but significant so far.

LDN is not toxic because only a tiny dose is needed-and the mechanism of how it works seems to me to be both logical and obvious, now I have researched it. It is also cheap, so medical advocates have no financial gain. Which is refreshing.

I would advocate that anyone struggling should investigate it further. It has been the knot in my rope and after 4 days, i am compelled to share to all of you wonderful brave people - who have been such a support to me .

Watch the whole of this if you are interested in finding out more

The LDN Story (A documentary about low dose naltrexone) - YouTube

Love n light to all x

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🙂 Small but significant improvements can make such a difference to morale 👍 Someone mentioned this 'supplement' to me years ago, I haven't actually tried it, it's good to know you find it helpful 🙂xBeryl

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It’s made such a difference, even though satted difference has been small, you are right. It basically stimulates your body to produce your own endorphins which left me and Get the natural painkillers going. It doesn’t interact with anything and has been a dream come true frankly. I don’t know whether or not it will last or whether it is the placebo effect, but I am taking my daughter to Little mix tonight and don’t feel anxious at the thought… even though I’m going on my scooter...just the break in the anxious thoughts has been of such benefit.and it can’t harm, like so many pharmaceuticals can. It’s a very low dose of a medicine, not a supplement, just to be clear x

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Apologies for referring to LDN as a supplement, it is a prescription medicine 🙂xBeryl

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🙂 Thank you. I noted possible side effects, I hope to speak to my Neurologist on Friday🙂xB

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Hey it’s worth a go Chick and even a tiny positive difference can be worth it.

Normal daily dose is 50mg, this is a 1-2.5ml liquid dose so side effects none existent and it doesn’t react with other meds.

It’s better to take in the morn,than at night, because it can cause vivid dreams.

I havnt dreamed for years and fell asleep on the sofa yesterday and had what can only be described as a delicious dream about best friend who is a boy.... can’t think of him now without blushing!

But no, at such a tiny dose, you don’t have to worry about side effects.

Let us know how you get on glamour girl....I got my prescription off my GP not neurologist - (but then he is away with the fairies , but GP keeps it real). X

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That is so exciting and sad at the same time Exciting that you were able to find something that is helping, but sad that your doctors didn't know the story and even sadder that modern medicine continues to overlook treatments like this because of a lack of financing.

Thanks you so much for sharing!! A good friend of mine has MS and I just texted her and she had not heard of this so you just helped your first MS patient!!

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Thanx 4 sharing but I am confused. Is LDN just for MS? Is it a drug or a supplement?? Thanx N

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🙂 It's a prescription medicine Neta. It's actually prescribed for various reasons 🙂xB

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I see and thanx. So if your dr doesn't prescribe it, its a no go right?

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😏 It looks that way. But, you can always ask 🙂xB

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Right. My neurologist always nixes my ides but I will keep trying..xxN

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🙂 Click on the link, familiarise yourself with the information, print it off and take it with you 🙂xB

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your doctor is unlikely to suggest it, no. But if you ask they are likely to give you a private pescription which would have to be dispensed in Scotland, then dicksons will post it to you.

If you go to doctor with some information and demonstrate you understand why and how it could help, then you have more chance of getting it. My doctor wrote to me to congratulate me on my research and was pleased to prescribe it and felt it would help. But that’s just me. In the past it was difficult to get one, but doctors seem much more open to it now - as there is a lot more evidence and research available. And most importantly, people who have spoken out about how it has helped them and neurologists who advocate it, hence why I thought I would try it and find out for myself.

How are you doing anyway neta, I know things have been tough for you warrior lady xx

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Thanks for sharing this with all of us,I am glad things are improving for you even though they are small but each step is a bonus.

Forget the bunny boiler live goes on for the better

Well done and thanks again for your information

Take care

Arthur

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I don't think you can get LDN on an NHS prescription in England. Some people can ask for a private prescription. It is calassed as an off label drug here .i also have fibromyalgia and I know some who take it.

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@pollybanana this would be of particular interest to you, because that ldn documentary includes a woman with fibromyalgia- just watch it if u get a min Chick. X

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Thanks everyone for your kind and supportive comments, and the link to the ldn trust. These can explain a lot better than I can, but to try to clarify, it works by stimulating your body to produce it’s own endorphins - so it’s relevant for a variety of different issues, not just MS, and has a variety of benefits for anyone not 100%

It’s seems to have helped my mood, pain and balance, which is why I thought it would be relevant here.

If u watch the links, it will elaborate and explain.

You do have to get a private prescription, which dicksons chemist in Scotland and dispense for you. More and more GPs are wise to it, so it’s not a problem and costs £10 a month.

I hope your friend with MS benefits! I think we could all do with extra endorphins, as ours isn’t an easy path. It’s also safe for children as well.

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It's some years since I was told about LDN, and the fact that it could be obtained from a Chemist in Scotland. But, I didn't know about the £10 option, interesting 🙂xBeryl

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Channel 4.. 10pm this Thursday " searching for a miracle cure"

Saw it on BBC breakfast this week... I was amazed... man with MS.. a must watch.

I have FA & my mum in law has polymyalgia so I will investigate further.

Good luck to you x

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Mary Rose thanks for that and thanks for thinking of me - yes a few people have advised me to watch it, the chap is apparently a lovely man and gave a good interview to radio 5 .

It’s the ataxia that’s been as big a problem, and so thought I’d post here, because some of those symptoms have abated ... for the first time this year! ...I think I must have run out of endorphins, and that’s why I’m seeing an improvement?

I hope you too are thriving and surviving x thanks again love n lite from liverpool

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Hi Mermaidia11,

Thanks for sharing your experiences - are you still taking LDN & can you see improvements?

Take care Dave

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Hi Dave

Yes and yes! And I’m still awake and cleaning the bathroom, which has been unheard of for me this year!

I found out some more intel as well - the LDN Reaearch Trust can organise.a consultation with a prescribing GP, for anyone having difficulty getting a private prescription from their med team The network of GP’s is worldwide for anyone overseas

I hope you are well

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That is really good to hear - I am thinking of seeing my GP for a prescription & give it a go - I have SCA6 & not taking anything, the way I see it is theres no harm in trying it.

regards Dave

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It offered me a bit of hope and after two days, I wondered if it was the placebo effect. But nope! Research, medical trials and numerous studies offered evidience, which has now been accepted.

I have CA from my MS and whilst well versed on that(sadly, or perhaps fortuitously) I don’t have much knowledge of SA6

But I know a man who does! (Scousers- not sure if he has a dog lol lol)

I suggest talking it through with the ldn research trust will give you some specific advice, intel and answers to your questions about ldn and SA6. Ooh excited! Now I’ve worked out the mechanism of how and why it works!

Let us know how you get on and happy researching Sherlock!

Good luck Dave!

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Well knowledge is power Dave!

It is off licence, so some GPS won’t prescribe it. That’s my only worry, I have a mate with. MS who was refused it by neurologist and GPbecause neither of them knew much about it...

Let us know how you get on

Good luck!

X

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