Hi again all,
this may disturb some people and also shock others but i hope most of you's are open minded,
i use cannabis as self medication, and i have basicaly ran my own trials to see if there is or isn't a benefit to taking this illicit drug, but i have found it greatly beneficial to my stiffness and mobility.
i will gladly answer any questions regarding this form of treatment, does anyone else self medicate?

Yep, a good stiff brandy or two and I'm always more relaxed..............

Hi,

I tried several illegal drugs but had only advantage with X T C, not with cannabis.

Which medications did give you any improvement?

For those of you in the UK and Canada who are interested in this, I would suggest getting your doctor to prescribe a trial of the drug Sativex or Marinol. They are made from chemicals found in cannabis and are being used for MS treatment.

I personally will not use an illegal substance and the whole medical marijuana issue is still very controversial in the US. However cannabanoids like these do stimulate the chloride channel and will make the symptoms of myotonia better for some people.

Be aware that they do also cause some of the same side effects as smoking marijuana. I saw enough of that from growing up in the 60s to make me run the other way :-)

Anyway, here's an article on Sativex and a link for those who want more information:

http://mpp.org/sativex.html

BBC News, 15 November, 2005

Cannabis drug available in the UK
Multiple sclerosis patients in the UK are to be able to get a cannabis-based pain-relief drug from their doctor for the first time, it has been announced.
Sativex has already been licensed for use in Canada to relieve pain in people with MS.

The Home Office has now said the drug can be imported to the UK for individual patient's use.

MS charities welcomed the development as a step towards the drug being fully licensed for use on the NHS.

This is a move in the right direction
Mike O'Donovan, MS Society

Eighty-five thousand people in the UK have MS. It is not yet certain how many of them would benefit from Sativex.

The drug is a mouth spray containing two chemicals found in cannabis, tetrahydrocannabinol and cannabidiol.

The announcement is believed to be in response to enquiries to the Home Office from doctors and patients about access to the drug.

'Quality of life'

Under the new arrangements, the prescription of Sativex would only be permitted under Home Office licence.

PAIN RELIEF
Sativex can significantly reduce nerve pain in MS patients, a study has shown.
Researchers at Liverpool's Walton Centre for Neurology and Neurosurgery compared the drug with a dummy version in a study of 66 patients.
Dr Carolyn Young, who led the research which was published in the journal Neurology, said the drug was seen to reduce pain and sleep disturbance.

A doctor would have to take responsibility for the prescription of the unlicensed drug, which would have to be imported from Canada for that particular patient.

Primary care trusts could decide to fund the treatment on the NHS. Otherwise, the drug would cost patients approximately £4 a day.

The government has asked a watchdog, the Commission on Human Medicines, to monitor the safety of Sativex.

Mike O'Donovan, chief executive of the MS Society said the prescription of the drug was: "a move in the right direction".

He added: "We believe there is now good evidence that cannabis-derived medicine can relieve distressing symptoms like spasticity [stiffness and muscle spasms] and pain in MS.

"Many people do not find available treatments effective and will now have the opportunity to try a new drug which could significantly improve their quality of life.

"We very much hope it will not be long before it is licensed for NHS prescription."

Cannabis research

Chris Jones, chief executive of the MS Trust added: "We must, however, highlight that, as with any treatment to alleviate MS symptoms, those which work for some people may not for others.

"With this in mind, we are pleased that people with MS may now have the opportunity, in discussion with their doctors, to access this treatment safely and legally and find out for themselves whether it is beneficial."

In a statement, the MHRA has said it did not object to the importation of Sativex for use to relieve pain in MS patients, but said it must be informed if the product was intended to be used for any other condition.

It added: "Under current regulations, the MHRA may only refuse an application to import an unlicensed medicine into the UK to meet the needs of a particular patient if there are overriding concerns about the product's safety or quality.

"Lack of proven efficacy is not a ground for refusing the import."

The company which makes Sativex, GW Pharmaceuticals, has been seeking a UK licence for the drug since 2003.

It has been granted a licence to cultivate cannabis for medical research purposes in the UK. Plants are being grown at a secret location in the English countryside.

The company says it will continue to seek a full UK licence for the drug.


Story from BBC NEWS:
http://news.bbc.co.uk/go/pr/fr/-/1/hi/health/4438498.stm

My boyfriend has MC, Im a nurse so was really intrested to find out more about it and we look at this forum often, hopefully one day he will write his story, but he's not quite ready yet, any way he smokes every day and beleives that it really helps with the stiffness and the aching.

I'm sure he'll have loads to write, i do, how old is your other half by the way, when did he get diagnosed?

i find it makes me worse

Type of Myotonia: johnrobia@hotmail.com,3

My other half, Andrew is 27, we live in england but are both NewZealanders. He had alot of trouble geting the diagnosis in NewZealand, and i beleive they tested him for everything under the sun before finally making a diagnosis of MC when he was 16.
He has not yet had genetic testing but we are hoping to get this under the NHS while we are living here.

The only problem with the smoking is the coughing reflex is not the same as normal people, and he coughs quite a bit been a smoker.

Andrew gets really sleepy, not just when he's been smoking but any time he relaxes, or sits down he falls asleep, like we went to see the devinci code at the movies and he only managed to stay awake for half of it which sucks, even though i kepted elbowing him to stay awake. He cant watch TV either cause he falls asleep!!!