Hi All!
Do you think it is worth me asking my Consultant (MS), about LDN and whether he might be able to prescribe it for me?
I have asked via the MS Nurse and she has said she cant as its not licsensed for MSers.
I’m gutted as really want 2 give it a go but can’t because of no cash spare. Seems so unfair 
Or wil the consultants have the same decision making scope as the nurses?
thought it be worth asking here and thnx for replies in advance
love n god bless
Anna x
Hi Anna,
I can’t see that you will lose anything by asking, as I believe there are a very small number of neuros & doctors in the UK who will prescribe. The worst that can happen is they say no. However, I believe that’s exactly what they will say.
I’m afraid I can’t see that it’s “unfair” that the NHS won’t prescribe whatever you want.
I believe chocolate helps me feel better, and I’m absolutely positive gin does. Sadly, neither of these is available on the NHS. My doctor recognises the therapeautic effects of gin, and has even advised me: “Oh, have a G&T!”, on one occasion (though I doubt this features in my notes). However, she still can’t prescribe.
Tina
Hi ive been on LDN for just over 3 years and its the best thing iv’e done .What i did was down load as much info as possible and took it to my GP who didn’t know what LDN was,like many GPs he wouldn’t prescribe ! so i went down the E-MED rout ,and as long as your GP lets E-MED know that you have MS and you have no other problems. It takes a bit of doing but its worth it .Good luck !
David
thnx for your reply Tina,
i see what you are saying hun. I said it was unfair as I know several gps who actually think it would benefit their patients with MS.
However, through fear of being sued as its not okayed for MS, they cant prescribe it. yet they know that there are ppl who have gone privately and benefitted from it.
Also, this was not a dig at the NHS or my MS Nurse. i totally understand where they are coming from too. just think its horrid that the powers that be, i.e. the goverment; won’t even consider funding a proper trial for this possibly life changing drug. thats whats unfair IMO.
Loved your quip about the GnT hun lol!
Oh we can wish innit lol!
imagine that, getting our normal meds and a drink on the side, tht be ab fab wouldn’t it hun?
tc Anna x
thnx for the reply David,
Glad you have had some success with it and your gp. If you go down the emed route, how much is it from consultation to getting the script plz?
where abouts do you live hun?
asking as different areas charge differently n all tht
tc Anna x
Its £20 per year membership,to E-med,
£30.50 for tablets or £15.50 for liquid thats 3 months supply
Im from Lichfield Staffordshire
David
LDN is an unlicensed formulation of a licenced drug and it is perfectly legal for any doctor to prescribe it. The issue of NHS prescriptions is not really dependent on individual doctors but your local PCT. Some PCT’s will allow it to be prescribed on the NHS others will not.
However just because any doctor can prescribe it does not mean you have a right to demand they do so it is a matter of making a case.
The licencing issues is not as big an issue as many would like you to believe in that many drugs routinely prescribed to treat MS or the symptoms of MS are not licenced for MS.
So LDN is just like many other treatments for MS it is dependent on a post code lottery. For instance Sativex is licenced for MS but our PCT will not fund that at all.
There is now one company that has said they are going to test LDN with a view to getting a licence but even if that happens MS is unlikely to be the first target disease and it will be likely years before it happens anyway.
I can see all sides of the argumnent. I have been trying to access sativex or fampridine for the last year. The argument that I have been trying to put forward is that I have a 19 year old son with both autism and downs syndrome. I am finding it hard to keep him at home. I have been offerred full time residential care for him at a cost to social services of £6000 per week. BUT i want to try sativex and famprindine to see if they would help me so that I could keep my son at home, which is what I want to do. Cost comparison is £5000 / year for what I want compared with £6000 per week for what they want! Unfortunately I thinks I am unlikely to win.
Regards
Moyna
Moyna
I think you have the same problem as many in that whilst the PR is ‘no decision without me’ the reality is there are organisations that actually want to say what’s best for us and enforce it on us. This becomes even more problematic when you want to make decisions for a minor or someone not mentally fit to make their own decisions.
When our children were young we met the parents of a vaccine damaged kid, totally paralysed and no denial from the medical profession that it was vaccine damage. Once we knew how dangerous vaccines could be we dropped all further vaccines for our kids. Now I don’t want to debate here if that was the right decision because that will just open a hornet’s nest. However our decision was accepted without any questions at all. Life has changed a lot since those days
Ever decision anyone makes can be wrong but the question is who’s supposed to make decisions about our health and those we are responsible for.
Here is one such case that has been in the news recently and I must admit I thought this was about alternative cancer treatment but according to this article that is not the case it is actually about a mother who wants a different treatment for her son than the PCT are prepared to offer.
So on the face of it more has been spent on legal fees defending their choice than actual funding the treatment the mother wants. Into the bargain her child has been taken away from her to ensure he gets that treatment. Just what every 7 year old needs , to be taken away from his mother at such a time.
The doctors here thought this child was going to die without the treatment they were going to give him. The father believed them, the mother doesn’t. The courts made the decision they did because they were considering the best interests of the child.
It is a reality that one gp can and another can’t give out some drugs. Maybe its a money issue, but i know that my gp treats me differently now than before i had ms. I think its because i have a neuro now and should go to him for ms issues. But Ldn seems to work for some (not all), so we should be able to try it at no cost to us other than perscription charges. We need NICE to give it the go ahead for treatment for us with ms.
It is £18.50 per month plus £17.50 every three months for a repeat prescription.
I think the membership is as you say.
That is via the E-Meds/Dicksons Chemist route
Regards,
Paul
Your consultant will have sent your GP a letter confirming your diagnosis. You are entitled to a copy of this letter. Just give them rough dates and details and they should send you copy. They may charge, they may not.
You could also ask your MS nurse to confirm your diagnosis in writing, this is also acceptable. I did check on this.
Regards,
Paul
Hi David, it is impossible not to feel frustrated some times. I have been to 2 neuros and got two different diagnosis. Possible ms from one and radiation myelopathy from the other. I only have one lesion and a clear LP. I had radiation treatment for hodgkins lymphoma in 1990. The thing is that long term radiation damage sometimes happens (15%) if the radiation is done to a tumour in the spine. My radiation was apparently nowhere near the spinal cord (according to the neuro who thinks MS). The other neuro indicated that ‘mistakes’ can happen. Anyway based on the radiation myleopathy diagnosis I have spent about £7000 within the last year of my own money because treatments for the condition are not covered on the NHS. EG £1000 on hyperbaric oxygen therapy and £6000 on a ‘cancer’ drug called avastin, which is used in the states for people with RM. My MRIs seem to be stable (I hope) but have been left with spasticity. Neuro thinks botox, sativex and or fampridine could help, but he has no funds to perscribe - could only get them privately. I feel that I have spent enough money on treatment which is essentially probably a NHS mistake. I am not a person to sue. I just thought that special circumstances could be made given the possible mistake and the fact that I am a full time carer for another adult who can do nothing for himself.
Regards
Moyna
Moyna,
l sympathise with your predicament - and l hope you do get more help. Perhaps you should start ‘making a fuss’. The nhs is very worried about being sued. And l heard recently that our local hospital has paid out thousands in compensation - out of court.
l do get Sativex - my gp prescribes it. And l do take ldn - which l pay privately for going the e-med/Dicksons route. Next time l see my gp l shall ask if l can get it on nhs prescription. l am seeing a neuro next week - and intend asking about fampridine and a WalkAide Fes. As l do not take any dmd’s - l have been a cheap patient for the last 30yrs.
So much is spent on people with ill-nesses that are self-inflicted - it makes my blood boil when we are denied help that can make our lives much easier. l do not drink/smoke and l am not obese. l have had to pay for my own stair-lift/ adaptation to the house so that l can get about - walk-in wet room etc.
Best wishes to you and your dear son Moyna -
Fx
Moyna
I understand your frustration I could relate our frustration equally with other issues to do with our circumstances. The problem is I do not have any answers for you, everything my wife and I have done for our different health conditions we have had to fund ourselves and as far as I can see the reorganisation of the NHS will leave more people in that position than is currently the case.
The only positive I can say is that my wife nearly died in 2003 and having followed her choice of therapies she is now very much alive and in my case I would almost certainly been very ill by now if I had followed the NHS offerings but I am now very fit and well. Since neither of us have any medical qualification we have achieved what we have by accepting advise from outside the NHS, which does come down to the ability to pay.
I do not think much of it is down to NHS doctors either because they are being more and more controlled by the system which is largely controlled by budgets that will not fund newer treatments because of costs and will not fund cheap treatments like LDN because of so called lack of evidence. Although even availability of those on the NHS vary depending on where you live.
Money is also becoming more of an issue because of cuts in benefits so that will leave less people able to fund their choice of treatments.
Thankyou David and Campion for your support, I will battle on. I just wish I could get a definate diagnosis. I am now being tested for Lupus!
Regards
Moyna
My GP prescribes LDN, I didn’t ask my neurologist - I wouldn’t expect him to prescribe, but he writes to my GP to ask her to prescribe Tizanidine.
thnx Bouncy,
what is tizanadine that you mentioned?
is this another name as LDN?
Where abouts are you hun plz? As it might just be another post code lottery thing again for me maybe?
I haven’t been back to my GP yet to ask him about LDN, however im pretty sure ive asked him before and got a no…
I am having real trouble actually understanding what LDN does or how it will help a MSer too. I have been given info about it but through lack of concentration etc i can’t absorb and understand it properly to rely it to my dr. so i cant justify why i wud want to use it.
im working on getting a laymans terms on it tho, so wish me luck
tnx x
No, Tizanidine is not another name for LDN. Tizanidine is almost the same as Baclofen. They are muscle-relaxants. l have tried both and had dreadful reactions to them both. They made me so weak and feeble and unable to stand up - l was just like a ‘cabbage’. Yet there are folk who say they work for them.
Before l started on LDN l could say l was how you describe your own predicament. No concentration - even having a job to function. Now l feel really on top of everything - even surprising myself at how well l can still answer lots of the quiz shows on tele - even University Challenge/Mastermind - and l am always in demand to join teams for the pub quiz. Before - l use to lose ‘words’ - forget peoples names. lt was like living in a thick dense fog.
LDN is used by thousands all over the world. l have heard a few people who say they did not think it helped them - but that is rare.
Most of the anti -LDN ers - are folk who have never tried it - And reading there ‘posts’ l can’t help but feel that they would not be so depressed and down and so vehement if they were on ldn.
There is - so far - no cure for ms and still no answer as to why we get it except lack of sunshine - brought more to the fore by ‘epidemics’ of ms in the middle-east where they do have lots of vitamin d giving sunshine but they cover themselves up in robes and burkhas not letting the sun get to them.
Fx