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Ldn

someone once said to me you can get it private can’t find the post, I’ve asked gp he’s wrote to my neuro to ask him about it and if neuro says yes he will but neuro already told me no LOL.

Keeping options open and would like the info to get it private if they say no although most likely will.

Thanks xx

Hi

I got ldn prescribed through a Doctor listed on the LDN Research Trust (very helpful) and get it sent direct from Dicksons Chemist in Glasgow (helpful again!).

Neither my GP or Neuro were keen to prescribe but weren’t bothered if I arranged it privately.

Best of luck

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I have not used any of the online doctors, but this site has a selection to choose from. http://www.online-gp.co.uk/ If you decide to go ahead it’s best to start with liquid ldn from Dickson Chemist, as you can adjust the dose so much easier. Dickson Chemist

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Alysea, as Higgs says, go to the the LDN Research Trust website. They tell you which private doctor to contact. If you’re not sure what to do, phone them. You need proof that you have MS (letter from neuro) that you will need to fax or post to private doctor.

The doctor will send prescription to Dicksons in Glasgow and you will get the LDN though the post.

It’s almost impossible to get a neuro to prescribe it.

Good luck,

Pat xx

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I would like to try this as an insurance just in case it turns out that what I have is MS. Unfortunately cant get it privately without a definite DX. Limboland sucks as no DX then no treatment !

Moyna xxx

Anyone have this let me know what benefits it gives at moment I hardly have anything for Ms and the meds neuro gave me for bladder prevented me from emptying it at all, now I want to be able to hold it like I used to but housebound so want something to help bowel and bladder without the need to be close to toilet.

hard to know really…I take this and fampyra…nothing direct from the neuro. Certainly helps with fatigue and when I stopped it I fell over more often …whether related or not who nows. No major b&b problems so maybe ldn has prevented them becoming a major issue thus far …sorry can’t be more exact but hard to know what does what … just know I feel more upbeat on it than off.

Best of luck

Thanks my neuro has agreed to let me have a 6 week trial of this I want tablet form and if it improves walking slightly I am all for it but mainly wanted for bladder mostly.

Thank you x

Hi Alysea,

I didn’t know it was available in tablet form…I take liquid. However it’s very important to start at a low dose and gradually increase…that way you are less likely to suffer side effects… I believe the most common side effects are sleeplessness and vivid dreams, both of which I had but I dealt with that by taking the liquid when I got up instead of before bed.

Mine helps enormously with bladder and bowel issues but it did take quite a while for the improvement to become obvious. I don’t think six weeks is long enough. I also had a great improvement in what my nurse calls sensory problems…skin issues that feel much like Shingles but in reality there’s nothing there. That took almost a year to improve.

good luck, let us know how you get on with them,

Nina x

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God I hope 6 weeks is long enough I can trial it then if it helps neuro will let me keep taking it, worse side effects I had was on steroids, I had sleepless night and terrible diahorrea I am being started on low dose then slowly increase it 3mg gp said, I want tablet form and I want it for my bladder and bowels, I have terrible bloating that doesn’t go hasn’t for 14+ months.

If you know anything else that can help I would love the advice, I am so disabled the stiffness is making my walking even worse, you you find that exercises help ease it?

Got bad vertigo at moment, I don’t see neuro until March and I have another bladder scan tomorrow she has done it 3 times but said with Ms you can have good days and bad days, mine are bad at moment.

Thank you both, this forum is a godsend much appreciated (((HuGs))) xx

Alysea

You can get it in tablet form and actually this helped with me getting the 3mg rather than the two mg that i had previously been on. I am in Scotland and it is part of the NHS list… believe it is used for drug users at a far higher dose.

I can get it in tablet form at 3mg or 4.5 (which is too strong for me), my doctor prescribes it for me.

trish

Thanks trish, how has it helped you hun x

I get to trial it for 6 weeks I am in North west area, thought it was rare for specialist/gp to give it us, I am excited to try it I know that sounds strange LOL

Did you start it as a tablet form? I would like tablets myself hope 6 weeks is enough to see if it helps Xx

Alysea

Started on the liquid form have I have a good gp who said as long as you don’t sue me if it goes wrong i will prescribe, i did offer to sign a declaration but she said no. However one of her colleagues was a bit funny and when i was ordering it up , by this time i had been on it for six years he said try the 3mg, because the way the Scottish system seem to work , the tablet form is approved but not the liquid so i wanted to see if i could go up to the 3mg so agreed and that was around two years back, it helps my fatigue. The other MS medication has made me worse and i have tried most of them, and will not be going back down that road again.

Six weeks should allow you to see if it is going to work, and if it does hopefully you will get it signed off.

trish

Dr just phoned and said it’s too expensive to give me :frowning: ah well lol

Not having much luck, thanks all xx

My mum thinks the clinic is not legit and not a real doctor so I had earache from her friend so sick of people butting in all time sometimes I wish I wasn’t here period I am so disabled due to stiffness and vertigo just sick of it now :frowning: I getting it from 158 clinic soon.

Excuse my ignorance, but LDN ? what is this?

Stuart

Alysea

Regarding LDN Linda Elsegood is excellent at pointing you in the right direction regarding clinics etc.

I am presently reading a book by an Australian doctor who has MS. in his book he talks about LDN , saying it has good results, I have been on this for 8 years now it is the only medication that i can take as the rest make my MS worse.

Your mum is probably worried as there are a lot of quacks out there, but this is working for a lot of folk with MS and other conditions maybe show her the LDN site.

trish

Low Dose Naltrexone is an unapproved treatment for MS and most other autoimmune conditions.

http://www.ms-uk.org/choicesldn

She was just worried as my Dr said 500 a month but he explained its not the cost it’s because it’s not approved for Ms, that’s the reason they can’t give it, but I paid via Dickinson chemist so just waiting for it, and if it helps walking too I’m all for it.

Thanks x

Alysea

were was he buying it as it isnt anywhere near that price, i think that is the reason i am still getting it because if it was that price they would stop it, afraid here in scotland our NHS prices are going daft