A volunteer in a controversial clinical trial talks to Judith Woods
'I HAVE never smoked a cigarette never mind a joint, so I had no idea whether I'd go all woozy or not," says Lavinia Parish, with a twinkle in her eye. "I've previously tried taking cannabis in tea, but I didn't know how much to use, and I was frightened I might go floppy."
Lavinia, 51, suffers from multiple sclerosis and is currently taking part in the Cannabis in Multiple Sclerosis trial, the biggest study of its kind ever conducted. The £1.2 million investigation, in which participants receive the drug in capsule form, has been funded by the Medical Research Council.
Over the next 18 months, 660 patients will be signed up. For Lavinia, a former restaurateur who has been wheelchair-bound for the past five years, the trial offers the possibility of relief from her condition, as well as assisting medical research.
Three weeks into the 15-week study, however, Lavinia says she has not noticed effects of any sort. She currently takes three capsules a day and reports back to her local hospital every fortnight, when the dosage may be changed.
"I keep waiting for something to happen," she says. "I may be on the placebo, or it may be that cannabis just doesn't affect me. I'll have to wait and see."
MS is a disease of the nervous system that affects about 85,000 people in Britain, particularly young adults, often in very different ways. Pain, muscle spasm, fatigue and poor co-ordination are all common.
Lavinia's story is typical in that it reflects the sheer unpredictability of the disorder. Evidence of MS first emerged when she was in her early twenties, but after a few months, her symptoms disappeared completely. Then, nine years ago, they returned and grew steadily worse as she endured the strain of a difficult divorce.
"The first sign I had of MS was in the early Seventies," says Lavinia, who lives in the West Country. "I was playing tennis and I couldn't decide whether the ball was going into the net or not. At the same time, my left arm was a bit numb, and when I placed my hand in water, I didn't seem to be registering whether it was hot or cold."
Despite these early indications, however, she had no idea there was anything seriously wrong. She mentioned her symptoms to her GP, who sent her to a consultant. Lavinia is adamant that no mention was made of MS, although she can't remember what diagnosis - if any - was made. But she's glad she wasn't told earlier that she had the disease. "I would have spent the next 20 years worrying. But as it was, I was fine; I had four sons and was running my own restaurant and keeping busy."
In 1992, Lavinia was walking through long grass near her home when she realised something was wrong. "I suddenly became aware that I was having to concentrate on moving my left leg."
Over the following months, her symptoms worsened. She grew clumsier and started dropping things, took a tumble down some stairs and found that she often needed to dash to the lavatory with urgency.Then, in 1993, one of Lavinia's insurance policies matured. She decided to spend her windfall on health insurance and use the remainder to get private treatment for her leg. But when the insurance company consulted her medical notes, they discovered the problems Lavinia had suffered in the Seventies.
She was refused insurance, and the firm contacted her doctor. Her GP, whom she hadn't told about the more recent problems with her leg, referred her to a consultant, who ran tests that confirmed she had MS.
Although the root causes of MS are unclear, the condition is a result of damage to a substance called myelin, which forms a protective sheath around nerve fibres in the brain and spinal cord. When myelin is destroyed, electrical impulses to muscle and sensory organs are slow, distorted or fail to arrive. Lavinia's right leg started to cause her difficulties. The muscles began to tighten and walking was becoming difficult. After using a stick for a while, she resigned herself to using a wheelchair.
"I've not had pain and, touch wood, I won't," she says. "My legs are dead, but my condition seems to be staying the same. There have been moments of tremendous depression, especially when I'd just got divorced - but you just have to battle on."
Lavinia, who lives with her eldest son, Tim, has had a through-floor lift installed in her home. Although she needs daily help with dressing and housework, provided by the Leonard Cheshire home support services, she considers herself lucky that she has remained reasonably independent and still bakes, makes jam and tries to keep as active as possible.
Her ageing Vauxhall Astra has been converted to hand controls, but despite taking medication designed to relax her muscles, she finds it impossible to manoeuvre her stiff legs in and out of the vehicle.
"I can't get myself in and out of the car, so I have to have someone there at both ends of the journey," she says. "That's where I hope this cannabis trial will eventually be able to help me. If the drug were to stop my legs being so stiff, I might be able to get in and out of the car on my own."
Anecdotal evidence has long suggested that cannabis provides relief for a variety of MS symptoms. Earlier this year, a trial carried out by GW Pharmaceuticals on 70 British patients revealed that an extract of cannabis sprayed under the tongue significantly reduced pain, muscle spasms and bladder problems among sufferers of MS, cancer and arthritis.
According to Dr John Zajicek, who is one of the consultants carrying out the new cannabis trials, participants will be closely monitored for side effects. The study will not rely on patient feedback alone - a physiotherapist will assess the effect of the treatments on the muscles.
"Some studies rely on patients filling out questionnaires on how they feel, which may be biased because of side effects," says Dr Zajicek, who is based at Plymouth University and Derriford Hospital, also in Plymouth.
"Patients may feel euphoric because they are receiving a cannabis high, which may make them inclined to say the drug is having a positive effect, even if it's not actually helping."
Patients taking part in the trials will receive one of three possible treatments, in capsule form. These are: whole extract of cannabis; pure tetrahydrocannabinol (THC), the component in cannabis believed to cause relief; and a placebo. The results are expected to be available by the end of 2002 or the beginning of 2003.
Lavinia has always been open-minded about taking cannabis. Friends have given her some in the past, but because she has never smoked, she found it impossible to inhale. "I don't hold out much hope that a drug containing cannabis will help me walk again. I'm not expecting a miracle, but it would be wonderful if my legs were relaxed enough for me to move them."
For more details of the cannabis trials see www.cannabis-trial.plymouth.ac.uk.