Hello everyone, so I have two completely separate things i’d like to ask your opinions on. Firstly, after taking 3 different DMD’s and not tolerating them (oh boy could i write pages and pages about the crappy life changing side effects) I am beginning to lose my confidence in the big pharmaceutical companies who push these drugs. I don’t know, if you are on a drug that is working for you then i am very pleased for you but jeez, i have so many new lesions and have lived with so much discomfort (a term my neurologist uses for pain) from the drugs and from MS symptoms that i’m at the point where im thinking of looking into alternatives that are maybe not so supported by the NHS. I have heard first hand from someone who has pretty much been “cured” by taking LDN. There is a lot of anecdotal information out there swearing it is a wonder drug for MS. I’m not getting my hopes up, i’ve learned the hard way not to do that, but i wondered what you the MS Society forum society think about it…
Another completely unconnected issue is that of cannabis. Boy have i been feeling constantly terrible of late. I feel like my stiffness and pain and dizziness have been nearly constant and there is no respite on the horizon. That is until i got some pot. Holy moly does it help me. I feel like a new woman (briefly) but i don’t want to become a pothead. Who does? Apart from the lung disease and the reduced/changed mental capacity to function in public, what do you lot think are the downsides to using this for pain relief? I can’t get away from the guilt side of it. The social stigma of pot smoking. I thought i was more open minded than i evidently am. I tried taking some other pain relief but again, the side effects were so intense. I have been grinning and bearing the pain until now but i think i’ve reached my limit and need to address the pain issue. Who can even have a conversation or smile or do anything when you are in a crap ton of pain? Ahhh, i am ranting now. Guess this is the place to do it. I hate alienating my friends so i’m afraid you guys on here are gonna get it.
Any advice concerning this rant, much appreciated… I guess it is evident that i am somewhat at my wits end…
i enjoyed it recreationally for many years without any long term harm or constraint to my social standing.
i associated with myriad individuals who also preferred it to ‘mainstream’ methods of reality distortion.
i am aware of its medicinal benefits as well as the social ones from first hand exposure. the fact that the government persists with an almost ancient and frankly misconceived law, illustrates perfectly that personal health and wellbeing are too important on an individual level, to be bound by arbitrary legislation. with regard to Pot, even the americans have figured this out!
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your concerns of becoming a pot head are fair. but the medicinal aspects of THC and cannabinoids do not cause side effects of intoxication. and even if you get bootleg bags of weed from a dodgy street corner, you could still administer a dose big enough to gain benefit, without being ‘stoned out of your box’!
that’s barely a complaint, let alone a rant, . you’re right, this IS the place to say what you need to, there’s always people here who ‘get it’.
as for me, i’ve been dealing with pain (b***er discomfort!), for over a decade now. it took me quite a while to get on the meds that (mostly) work for me, if i bump into anything i now virtually rattle. i haven’t tried LDN, but like you i’ve seen people saying that it works for them. i’m always very cautious of any ‘wonder drug’ claims, though.
in the early stages, i did use cannabis, as it was the only thing that let me sleep for more than an hour at a time. at that point i was pretty much a basket case, crawling up the walls. i’d speak to your neurologist, GP or MS nurse, maybe all 3 if necessary, and start trying different pain meds… it sounds as if pain is your biggest issue too. it’s all about quality of life i think.
i hope you get some solutions soon. keep on letting off steam , it helps!
i smoked cannabis for recreational purposes all through my twenties.
however now that i need the pain relief from it, it has started to give me “whiteys”. that feeling when you feel the colour drain from your face. not nice at all.
if i could get the cannabis oil that would be great but i’m limited to what paulo describes as dodgy back street dealers!
LDN - has no down side at all.
i took it for 2 years and stupidly let my prescription end and my gp has changed now.
i’m going to have to get it from somewhere else because i feel the need for it.
it feels like we’ve been dumped upon by the drugs laws but we just have to do whatever we can t help ourselves.
i say do what you have to do and fluff anyone who disapproves!
firstly I don’t think your were especially ranty and I’d go further and say 'bitch away to your heart’s content as this IS the place to.do it.
Secondly aside from being an accepted abbreviation of ‘london’ I’ve not tried or know what LDN is, as I’m not as hip as you kids.
Thirdly regards to cannabis having a stigma, I’d say.that your MS is an extenuating circumstance that nullifies any stigma and would be so bold as to say it is a victimless crime. You can take it discretely without becoming a pothead and don’t have to smoke it either. Don’t give yourself such a hard time.
when i told my neurologist that i’d been using cannabis, he said that if i ever came to grief with the police, that he would be happy to confirm that it is known to reduce symptoms of MS, kind of him to offer. again, Sativex, if you can get a private prescription from a doctor. interesting that a site for people with MS has a forum that doesn’t recognise the word Sativex
Thanks for all your ’ right on’ responses. Gonna look into other forms of pain relief but until then yeah, screw social stigma! Extenuating circumstances is right. I gave up drinking because that legal drug made my symptoms worse. I should not beat myself up due to some archaic ideas about the effects of marijuana if it makes my symptoms less painful. As for LDN, yes i too have become highly skeptical when it comes to ‘miracle drugs’ but if anyone will prescribe it to me i don’t have anything to lose i guess. Thanks again, i will be sure to pass on the supportive vibes to some other folks!
No responsible person would ever call ldn a cure and it’s certainly not a replacement DMD. However, it’s highly unlikely to do any harm and might help help ease a few symptoms, so well worth trying in my view.
I used street cannabis and found out how much it helped my symptoms so I asked my Neuro for Sativex. I had a prescription for about a year until it became fully licenced and the cost went up dramatically. I now have Pregabalin, and Amitriptalyne for pain and Baclofen and Tizanadine for spasticity. Not quite as good as the cannabis but much cheaper (I have a prescription pre-payment card).
There is no need to smoke the cannabis - it can be used with a vapourette or eaten in cookies/chocolate etc. Finding the right strength of cannabis is the thing. Or even better try to get cannabis oil. Widely used in US. Especially for people suffering with cancer. l use Sativex - and get mine with prescription from GP. lt is much better - with none of the dreadful side-effects that the drugs Baclofen/Tizanidine etc cause.
l know of someone with inoperable cancer who has refused chemotherapy and is using cannabis oil instead. They decided that what time they had left they were not going to spend it being very ill and sick. After seeing friends go through lots of chemo - and seeing how they suffered before eventually losing the battle, l can understand their reasoning.
Now LDN, this is brilliant if it works for you. We do not all respond in the same way to meds. l know how dreadful the side-effects of baclofen/tizanidine for me are. LDN - just makes me feel more positive - more alert and more able to cope with ms symptoms.
l have had PPMS for 33yrs now. When the first DMDs became available l did ask about trying them. l was told that my MS was the wrong type and also that the side-effects could well be worse then the MS symptoms that they were supposed to help.
l am now trying Biotin after reading about the trial going on at Barts. What have l got to lose? And after doing some research myself - l have found that you cannot overdose as the kidneys just flush out what is not used.
There are many pwms who cultivate their own pot plants. This is possibly the safest way to get the right strength and purity. And as long as it is for your own use - you would not need to grow much. l bet there is lots of info online to help.
So yes, l use LDN and also Sativex - and for me its the only meds worth taking.
Dave, For many years l did not have to pay for prescriptions - l asked my GP to fill in the form for me - saying l had a progressive - incurable disease. l got the exemption card straightaway. So l do not understand why you have to pay - even a pre-payment card. Once l reached 60 - l then got exemption anyway. But for about 20yrs prior to this l never had to pay. You need to be a bit forceful - put your case firmly and a good GP will help. You won’t get what you don’t ask for. Like benefits - you have to find out for yourself as they never offer help. My husband is diabetic and was getting all his meds free - even though he was working full time. Thyroid sufferers also get it. So why not us. l only mentioned it once to my surgery - and they filled out the exemption form straightaway - and l got it- and l can drive to the surgery - so it has nothing to do with how disabled you are.
Hi, I have cannabis in milk at night, I only use the leaves not the resin because they mix it with lots of other rubbish I simmer it in the milk for about 15 minutes, it really helps me to sleep, thinking of growing some in my poly tunnel this year,I have thought about asking my Doctor about sativex because its would be easy to use during the day, I also stopped DMD drugs because of terrible side affects.
I think I had to pay because it was not on the NHS it was a private prescription from my GP…before it became “available” on the NHS. I would still have had to have a private prescription even in that case. The medical exemption card would be a good thing. I see my GP next week and will have a chat with him then. He’s a very good Doctor and if I make a case for it he will help out if he can
l first got my Sativex by private prescription via my GP - Then when it became licensed for MS use - My GP prescribed it on a NHS prescription - l think it must be 4yrs now - maybe more. She contacted a Consultant Neuro who gave consent. The PCT did try to stop my GP - but because l was already taking it and benefiting from it they had to continue.
so sorry to hear about your pain etc. I’m not that bad, but I can vouch for what space jacket has said.
I had a serious life threatening illness 3 years ago & couldn’t take anything for my MS. Pain was intolerable, especially at night. I have a greenhouse, so asked my consultant if I could ingest cannabutter & he fully approved, likewise my Ms consultant, Ms nurse & my GP. I would never smoke. I tested vapourisers, but positive effect lasted less than 2 hours. Street cannabis could be full of anything, let alone the strain you need. THC is good for spasticity & fatigue. High CBD excellent for sleep & pain. I buy seeds from the internet with a vast array of instructions. You can get the medicinal strains too, which have been legalised for medical use elsewhere. I know what you are ingesting, free from any pesticides etc.
i have recently been using highly concentrated CBD oil, which has no THC, so not illegal. The jury is still out on that one.
i haven’t tried LDN. I asked my consultant what he thought, - not a lot. But just ordered Biotin. As with cannabis, the evidence appears to be there. I’m sure the big drug companies won’t like it. Perhaps that’s why cannabis is still illegal in the UK? I believe Sativex now removed from approved list by NICE.
The way I see it, we need to take control of our lives as much as we can, particularly when there seems to be limited “official” alternatives.
Like yourself I cannot tolerate the meds designed for MS , I have a low tolerance and it eventually hits my gut, have gut checked out just in case, but it is the meds that are doing it, had a nightmare Christmas and ain’t going down that route again. I take LDN and as Whammel says it ain’t a miracle cure however it might give you some relief, and it has lower side effects that the other meds. Regarding Cannabis my doctor joked why dont i try it but as i have never smoked or the fact that the drugs upset me will not be going down that route my neurologist did say for me to try sativax i need to prove that the rest don’t work, sorry only an idiot would put herself through all of that, tried it and dont want another christmas like that, and the sativax may have the same effect.