This Is MS Multiple Sclerosis Community: Knowledge & Support

Greetings All...

I took various Sativex documents to my GP for her to read and decide if I was a good candidate for the drug.

As I handed them over to her, she said "is this that cannabis spray"?

I said yes, what do you think?

Before I could finish that short question she put her hands up in front of her and backed up quickly (banging into a table).

Anyone watching this would have thought she was being handed an envelope with Anthrax...

Up until this point, I thought I had a decent relationship with my doctor, but this reaction was a setback on all fronts for me. So much so, I blurted out... I haven't asked you for a single MS related drug in 10 years, and the first time I see hope with a logical solution to pain, you act like a child.

I shouldn't have said that, but as a doctor, and knowing the pain I have endured for so long, her reaction was not much better.

Has anyone, particularly in Canada, had similar reactions from their doctor?

@xms: we have an interesting discussion about that at MSRC; you might be interested to peek...

http://tinyurl.com/6rkmrms

Hope it can help

Thanks, but your link lands on the home page... do you a specific URL for that discussion?

I approached my neurologist for Sativex for spasticity and stiffness. He went on a little rant about cognitive difficulties and them not remitting once the cannabis was stopped. Said there was a study showing this long-term problem.

Turns out the study was about medical marijuana not sativex. He also said he wanted me to stretch for 6 months and then if he felt the need he would change my prescription from baclofen to gabapenton. I'm not overly impressed and as my 6 month appointment is approaching, I will not be taking the gabapenton, I will request the sativex again. and if he refuses I will speak to the director of the MS clinic.

Sorry; try http://msrcsharing.yuku.com/topic/20695 ... abis---won

Yes XMS, I've had that type of reaction from Canadian doctors before. From my experience however, it seems that all doctors in Canada are reluctant to acknowledge any form of prescribed treatment for MS, Cannabis related or otherwise. But on with my rather lengthy rantings upon Sativex . . .

Sativex, perhaps the one best medication for MS symptoms that no suffering MS patient can ever receive.

I've had Remitting/Relapsing MS for the past 15 years, diagnosed right out of high school, and as a Canadian living with MS, I can attest that our public healthcare system is terminally ill.

As for Sativex, I've asked quite a few doctors about it, even presented them with the relevant literature. In turn, I've received some very disturbing responses, or excuses rather.

Former GP - Gave him one of the information pamphlets for Sativex, noting that a friend had it prescribed to him for chronic asthma, and a relative for Carpal Tunnel Syndrome as well. Highlighted the portion that states 'intended for adults with MS'. GP had never heard of it before, said he could be sued if he talked about it, not for prescribing it, but just talking about it. When pressed for an answer, he could not identify this illusionary litigating party, simply responding 'Sorry, can't say.' He eventually dropped me as his patient, my never having received any treatment from him, not even for requested referrals to specialist, for which he could also be sued.

Perspective New GP's - They won't accept me as a patient for sake that they could get into a lot of trouble with the BC College of Physicians and Surgeons for accepting a patient with MS. Apparently, doctors can also have their medical licenses revoked for prescribing any Cannabis based medications, and even for accepting a new patient with a confirmed diagnosis of MS.

Walk-in Clinics - They claim Sativex requires special prescribing privileges because as a Canabinoid, it's technically illegal. Sativex currently holds the same narcotic scheduling (Schedule 2) as Tylenol 3 with Codine. Guess they're not much of a doctor if they can't prescribe T3, but can somehow prescribe Schedule 1 narcotics like morphine for accident victims, cocaine eye drops for glaucoma, Oxycotin/Oxycodone for bumps and bruises, and Aderal for energetic and rambunctious children. Of course, they can be sued by some undefinable medical malpractice plaintiff too.

Pain Therapist - If she were to prescribe it to me, then she'd have to prescribe it to everyone. Oddly, she tells me it would just be easier and cheaper for me to simply smoke pot, but again, will not endorse the Health Canada Medical Marijuana Access Forms because she'd have to do the same for everyone else, regardless.

Neurologist No. 1 - He's never heard of the stuff so he's reluctant to even discuss it. He did prescribe me Gabapentin once (which does nothing for me), but said that was the absolute most he could ever do.

Neurologist No. 2 - Works at an MS Clinic, also told me that smoking pot would be easier and cheaper for me. He can't prescribe me anything for personal, professional and legal reasons, and will not touch the Health Canada Medical Marijuana forms either.

Neurologist No. 3 - Works at an MS Clinic, claims that he does prescribe Sativex to his patients, but won't prescribe it to me. Insists that double blinded experimental trial study drugs are my only option. Then falsifies my medical records (which I have a copy of), claiming that he offered to prescribe me Sativex and that I refused. As both I and an impartial witness to that appointment recall, I requested Sativex from him and he refused. Also states in my records that I don't qualify for trial study medications, but on the next page states that I'm a perfect candidate for those same trial studies. My records further state that he's offered these trial medications to me (by name) on multiple occasions, but only ever vaguely states 'There's some very promising trail studies.', never to identify the title of those supposedly proposed experimental trials. I will respond 'No thank you.', as he retorts 'Sorry, can't help you with anything then.' with a smug little grin.

Neurologist No. 4 - Works at an MS Clinic too, yells and screams at me, accuses me of faking my symptoms, claims I've been prescribed a laundry list of medication, which I have not. Believes that Sativex is just like pot, though I can't imagine how one would ever smoke a liquid. Claims that from the thousand plus patients she has, that only 2 consume cannabis. Statistically impossible (when compared to survey figures), and especially so since I've conversed with several of her patients who have turned to Marijuana for the sole reason that she refuses to treat them.

Pretty twisted, the attitudes of Canadian doctors, considering MS affects more Canadians per capita that any other nationality in the world. Maybe it's something in the water up here (tasty), colder winters (chilly), all of the Uranium in the ground (largest deposits in the world), a conspiracy of moose and beaver (and or squirrel), or maybe we're just plain lucky (to live in Canada). But it's thoroughly insulting when every doctor I see will spout figures upon the devastating nature of MS, but not a single one will lift a finger to treat an MS patient.

Guess I'll just continue consuming the Cannabis I purchase at local Dispensaries in Vancouver, without the proper licensing and exemption from Health Canada. Should I ever face criminal prosecution for my unauthorized possession of that illegal plant matter, then I guess those doctors won't mind taking a day away from practice to sit in a court room, be called to the stand, grilled by my attorney, and have to testify, before a judge, that they cannot treat me for sake of possible medical malpractice litigation.

I wonder, when those doctors are unable to reasonably identify the litigating party who will sue them for prescribing Sativex, or for endorsing Cannabis through the Health Canada Medical Marijuana program, and when the judge orders them to answer, I wonder what they'll say. Perhaps they'll admit the truth, that their excuses of impending litigation are a suggested statements handed down to them by the medical college for purposes of dissuading patients from requesting certain medications and or treatments that the medical college does not agree with.

Honestly, I believe that the MS patients in Canada should unite to form our own coalition. I can't begin to describe the frustration involved, the denial, the apathy, and the ignorance of the MS Society, MLA and MP, social support services, all of them, either unwilling and or seemingly unable, perhaps incapable, to help anyone with MS. Can you imagine the impact we would have if united we a Canadians with MS clearly stated . . .

'No MS patient in Canada will engage in trail studies until such time that the government enacts
legislation that requires doctors to either treat their patients with the Health Canada approved medications they request, acknowledgement of health in relevant government forms for access to services for individuals with MS, and the necessary requirement that all doctors explain their specific reasoning for refusal of treatment in detailed written form. Give us that or every aspect of MS related research will grind to a halt in our country for simple sake that every single MS patient will refuse to submit to any form of MS research testing and or trial studies.'

That would put a great many doctors out of work near instantly. Government would be reluctant to fund MS research when there are no patients to research upon. It would force a great many doctor to concede and admit their faults in ignoring their patients. Pharmaceutical companies would beg for resolution as their profits begin to fade. It may even change the direction of MS research in Canada to one decided by patients, and not by scientists in laboratories nor the parasitic MS charities that use MS patients, along with their donations, to keep themselves employed as unaccomplished advocates.

We've all suffered with MS long enough. Perhaps suffering a little further may evoke some measure of change.

Thoughts?

C4MSinBC – As a US citizen, I often hear people sing the praises of the Canadian healthcare system; I am glad to hear your view on it. The program you described is administered by your government; is there private medical care available, too? Is it possible to find a private, independent physician who is willing to be your partner in your medical journey?

One of my favorite books is Multiple Sclerosis: The History of a Disease by T. Jock Murray – I think he is in Canada; is it possible to contact him for help in finding a doctor, one who is more of a "disease detective?"

There is a fine line between private and government controlled healthcare in Canada. For the most part private doesn't exist, that is non-accredited private practitioners are not permitted to prescribe medication. We have a vast selection of (well educated, and knowledgeable) health professionals who would support meds such as Sativex, and medical marijuana, if they legally could.

One hates to be cynical in cases like this, but as long as there are corporations (like interferon manufactures) who support "non-profit" societies and medical doctors, there is little hope of change, or progress. A perfect example is the liberation treatment... why would anyone; the MS Society (Canada), government, and MDs support a one-time cure that costs $1,500 (here) when they can all reap the benefits of $2,000+ / month / patient?

I'm not even sure if we can blame them, this country, and most of the world is in such a state of uncertainty, it seems we've reached a point where it's every man (and woman) for themselves. Yes, the future looks dim, and it's not just healthcare. Everything is slowly coming apart at the seams - the middle class that once represented the backbone of society is now facing extinction. It seems, soon, you will either be rich or poor (with no room for anything in the middle).

Regarding doctors being sued in Canada (and loosing), well, that's almost laughable... they are pretty much untouchable.

I love this country, but it's disheartening that disease-ridden individuals don't have a voice. Peaceful protests will be entertained but never taken seriously.

A lady in our town, near the end, went south for the liberation treatment, came back and ran a marathon. She made the front page of the local newspaper but despite countless cases like this, the MS Society and Health Canada wont budge.

And yet, despite feelings of betrayal, most Canadians (me included) still believe in our system, and "want" to believe the powers above are just being cautious, and eventually will come to the rescue.

I'm usually not this pessimistic, but every once in a while, ten years of neuropathic pain... gets the best of me.

Excuse me, XMS. I hesitate to interrupt the sativex discussion, but I just have to correct one absolute error in your post in order to maintain the integrity of the TIMS forum and avoid misleading the many, many people who come here to find out the best MS information.

The "liberation treatment" (which is seldom called that these days) for treatment of CCSVI is NOT "a one-time cure" for MS that would eliminate the need for expensive MS meds. In fact, no one - including Dr. Zamboni and others who do the procedure, considers it a CURE. No one.

And those same IR doctors agree that likely each patient will need to have it done more than once even when it's been successful.

And many of those treated continue with those expensive DMD meds, as recommended by their docs - including Dr. Zamboni.

That's all. Please carry on with the thread topic.

As for Sativex, I've never been able to comprehend the demonization of sativex and even medical marijuana by those who then advocate the liberal prescribing of addictive, mainstream pain meds. At my first neuro appointment, she handed me a scrip for a powerful pain med before reviewing my symptoms, even though I hadn't complained of pain. So...I handed it right back to her.

Pain sucks. I hope everyone is able to find relief from theirs.

_________________
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS or MS symptoms except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)

Just to put the issue of 'Liberation Therapy' to rest, it's all anecdotal at this point. In fact, research in the early 1970's indicated no correlation between MS and arterial venous blockage. And though there may be an abundance of patient testimony praising this still unfounded treatment, simple patient opinion doesn't mean anything to doctors.

Honestly, I've made a variant of Sativex in my kitchen before. Just take some cannabis, add some hemp oil, perhaps a little vodka, whiskey, absinth, and hard liquor, warm the brew to about 120 degrees Celcius, let cool in a dark cupboard for a day or two, strain through a fine mesh, home brew meds. Unfortunately, if I were ever caught making that simple extract, I could go to jail for several years, thanks in part to Prime Minister Stephen Harpers new omnibus crime bill, which makes consumption of cannabis a greater crime than child molestation and or rape.

In Canada. our social health care system is mostly an illusion. Health Canada has deemed Sativex acceptable for treatment of symptoms in adults with MS, yet doctors are scared to death of any medication that doesn't come in the form of a pressed pharmaceutical pill. Conversely, I've had doctors offer me many an opiate based pain killer, but when I cite peer reviewed scientific studies indicating that prescription heroin (because that's what it is) in ineffective for neuropathic pain related to MS, they're all dumb found by the notion that the propaganda fed to them by big pharma is false.

Perhaps the saddest statement to out social health care system involves hospitals. I
ve gone to the hospital before, requesting treatment for the symptoms all other doctors ignore, only to find that most of the medical staff at the hospital don't even know what MS is. On rare occasion, they might bring in a neurologist who will state that there's no treatment options for MS symptoms. I then present to them a list of a dozen plus medications specifically intended for MS, and surprisingly, they're never heard of a single one. But they're more than willing to write me a script for opiates, which I refuse, electing instead to lodge a complaint with the hospital administration, who state they have no control over the doctors who work for them. I complain to the College of Physician s and Surgeons who state that doctors are independent and don't have to answer to anyone. Then doctors tell me they're beholden to the rules and regulations, standards of practice set for by the medical college. My elected officials simply hum their apologies, say they can do nothing, and suggest I get another doctor. I would surmise, that if the health care system in Canada can ignore me in such a fashion, then I'll assume that the Canadian Revenue Agency want's nothing to do with me either, ergo, I don't have to pay taxes as they're not interested in associating with me?

As for finding a compassionate doctor, I've nearly exhausted all of my options. I've been to nearly every walk in clinic my city has to offer, to the hospital multiple times, prospective new general practitioners, specialists, and every single one refuses any form of treatment. And the MS clinics, even worse. I remember my first visit a decade and a half ago. I had asked about Stem Cell Therapy, which the researcher stated to be a false lead. But now, 15 years later, that same researcher states in publications that Stem Cell Therapy will soon cure MS.

The hypocrisy of modern medicine is unbelievable. Practically all of these doctors would have done far better as used car salesmen, lawyers, or con artists. And don't think that I hate doctors, I simply feel that every doctor would preform admirably if that burden of having to treat their human patients didn't get in the way.

Despite the depressing nature of my predicament, I still hold out hope that something will change, someday. Maybe I can finally get a doctors to sign the 'Student Aid BC Verification of Permanent Disability' form without ranting upon the illusion of litigation that looms over their hollow heads. It would be nice to have that form completed every year to indicate that I have a permanent disability that will haunt me till life's end. Maybe I can eventually get my drivers license, doing so without being told by the motor vehicle branch staff that people with MS aren't allowed to drive because they are blind and paralyzed all the time. Maybe I can apply for a job where a prospective employer doesn't discount my skills for simple sake that they could be sued for hiring someone with MS. Maybe my elected officials will eventually realize that there are human rights issues at stake, the type of issues that would not bode well form them if their ignorance to the subject was reveal come their next election cycle. Or maybe I'll just continue doing what I'm doing, live through the pain of MS, continue smoking pot, finish attending all of the doctors and clinics in my city, compile the remainder of the article I'm writing, submit it to a very, very, very interested publisher, and watch the fallout when the names of all these apathetic doctors, sham MS charities, and unwilling officials are published for an audience that measures more than a million in Canada alone and better than 20 million world wide and could exceed 50 million through subsequent online publication.

I'll continue to toke and smoke, vaporize and ingest that demon weed for simple sake that I'd rather be high living my life, eating, sleeping, running, exercising and working than to be sober, living in a bed, crying in pain, sleepless for days on end and unemployed for sake of my health.

Good luck with getting anywhere. It is supposedly legal in NZ. However I keep getting brushed off from the Neuro (who by the way over here in little Chch all appear useless and the doctor says to ask the Neuro so I have given up and whilst the pain is unbearable I keep on putting all those pain killers into my body. I have never smoked marijuana and am not about to start. My son seems to be doing that for me I am insulted that they have the audacity to think we just want the high although my understanding is that some of the effects have been taken out anyway?

I am thinking my liver will give up the ghost before much else but hey living with the pain is not a pleasant option.


Jam

Former MD shrank away in horror at any mention of the dreaded weed so I began looking for a new one,

Was told by the only neuro I saw during my one and only (will never go again) at the local MS clinic that maijuana would rot my brain and then made some derogatory remark like "Mediacl Marijuana .....there'scnothing medical about it!"

Now I have found a new MD who said certainly he will fill out the Health Canada Medical Marijuana Access Forms and said he'll do anything he can for someone with this diagnosis.

so I guess I'm lucky to have found an empathetic doctor up here in the Great White North

jam

The opiates your doctor keeps pushing will definitely have a negative effect upon your body. There's the obvious possibility of addiction, the constipation that comes with opiates, possible liver damage, and the cost of course. And though you may be opposed to cannabis in its raw form, there is Sativex (oral cannabis spray) and Cesamet (cannabis based pill). Both are commonly prescribed to MS patients for neuropathic pain. There are options that don't involve a bag of green.

However, whether it be a pharmaceutical cannabis based medications, or the raw plat itself, doctors tend to regard them as one in the same, regardless of the proven efficacy found in cannabis. There are many people who would benefit from cannabis, but doctors are reluctant to acknowledge that a recreational substance does have medical value. That's the mentality that needs to be changed for the benefit of patients.

Azaeleaprawn

I know the feeling, doctors dismissing their patients concerns because of the questionable history surrounding a simple plant. As for that nagging neuro, I'd like to ask them if there's any such thing as medical heroin, because there is. Medical cocaine, medical ecstasy, medical LSD, medical magic mushrooms, medical, medical crystal meth, medical alcohol, medical everything.

And pot doesn't rot the brain. All of the research indicates that there are some modest changes to neurological activity in cannabis consumers, but after 3 to 4 months of abstaining from cannabis, that brain activity returns to normal, even in heavy users. The only time cannabis is truly harmful is during childhood neurological development, as proven with laboratory model mice through a controlled study in Great Britain a few years back. In adults, continued cannabis consumption is far less harmful than any other narcotic, including alcohol, tobacco, nicotine, and pharmaceuticals. I wonder what that neuro would say if a patient suggested they were going to drink poppy head tea as a method of pain management, sipping those steamy opiates rather than popping a condensed pill.

Happy to hear too that you found a doctor with some measure of cannabis compassion. It gives me greater hope that there may be a doctor out there somewhere who would hold the same compassion for me. However, living in the conservative community that I do, I'm doubtful any of the doctors in my area are.

They're likely all frightened. Today it's medical cannabis, tomorrow it's tie die hippies and Fish concerts with a bong blast on every corner. Or maybe they're just afraid to alienate the pharmaceutical companies that pay them off so well.

sigh...

I am finally going back to the dr shortly so will hit him up re the sativex spray. I currently have bruises you wouldn't believe from falling (lack of balance). I am just worried about the sleeping with this, as it is not good now?


Jam

Well, I hope your doctor has the courage to write you that prescription for Sativex. Of what I've heard first hand from patients experience with that medication, the perceivable cognitive effects are no worse than a glass or two of string wine. They also indicate that it may take 20 to 30 minutes before the effect is felt, and that most of them didn't even notice until they thought about it. It kind of creeps up upon them, mellows the entire body, very relaxing apparently.

As for Sativex and sleep, every single person who I've talked with tells me that they can switch off like a light with that medication. They also all agree that it controls bladder incontinence, so no more getting up 10 times a night to pee.

Honestly, I've made my own crude version of Sativex at home (with a bag of weed and some Absinthe liquor in a French Coffee Press) and cannabis is no worse than alcohol, but minus the hangover.

One quick thought with regards to some scientific studies involving cannabis and MS patients, findings indicated that the majority of MS sufferers found relief with cannabis. However, that study indicated that those who consumed cannabis, they did tend to take longer in traversing that same distance as the non-consumer, but with far less pain and better physical form. Now what's more important, getting from A to B quickly as you falter, stumble and fall everywhere? Or perhaps taking your time in getting from A to B with far less pain and in better posture too?

Personally, I'd rather walk slowly whilst pain free than to race about crying in agony.