Gravesend multiple sclerosis sufferer urges government to trial controversial drug (From News Shopper)
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Gravesend multiple sclerosis sufferer urges government to trial controversial drug
A multiple sclerosis (MS) sufferer is urging the government to fund a trial into a controversial drug to treat people with her condition. Reporter KELLY SMALE finds out how the drug has changed her life.
AROUND 100,000 people in the UK are affected by MS - a neurological condition causing problems with muscle movement, balance and vision.
Lorraine Cook, of Valley Drive, Gravesend, was diagnosed with primary progressive MS when she was 49.
The 52-year-old told News Shopper: "I reckon I had it from 43 because I remember going on holiday and didn't want to do the walking.
"It started off with my leg dragging but there was no pain.
"I ruined the front of my boots and people would say 'pick your feet up'.
“The doctor said it was a 'dropped leg'."
But a fall at work causing an injury to Mrs Cook's shoulder led to an MRI scan and a lumbar puncture before MS was confirmed.
There is no medication for the condition so the mother-of-two took to online forums where she found out about Low-dose naltrexone (LDN).
The drug is not licensed to treat MS sufferers in the UK but a higher dosage of naltrexone is licensed to treat people with alcohol and heroin addiction.
Mrs Cook's doctor refused to prescribe the medication due to a lack of clinical trials so she now pays £17.80 a month to have it posted from a pharmacy in Glasgow.
Mrs Cook said: "Before LDN life was bloody miserable at times.
"I'd be very low about it because life isn't the same as before and you don't quite know why and how to get it back."
Before taking the drug Mrs Cook suffered from fatigue, severe pain in her right leg and had difficulty walking and holding things.
She said: "The first night I took it I woke up feeling really refreshed as if having the best night's sleep in months.
"Then I had a shower and washed my hair and I didn't feel shattered - that was the strangest thing."
She added: "I have had no pain at all since taking LDN and feel more alert.
"It's given me my life back.
"It's like having your light switch back on."
LDN Research Trust
LINDA Elsegood, 56, set up the LDN Research Trust in 2004 after being diagnosed with MS.
She said: "Not only me but thousands of other people feel as though they have got their life back from taking LDN.
"It's a very cheap drug with very few side effects, which has been shown to work for 78 per cent of people in some degree or other."
She added: "I hate to say it's a miracle drug because it isn't, it doesn't work for everybody, but for me it's been miraculous."
More evidence needed
Head of medicines optimisation at NHS Kent and Medway, Gaye Lewington, said: "MS is a complicated condition and only specialists should initiate prescribing of medicines or new therapies.
"Given in low doses, some research suggests LDN may have an anti-inflammatory effect which could be beneficial to some MS patients but at present there is a lack of evidence of effectiveness or even safety and this is required to enable a medicine to make it through the licensing process.
"We do not encourage the prescribing of unlicensed medicines where evidence of effectiveness and safety is lacking, however, if the specialist decided it is the right clinical treatment, it could be prescribed for a patient by them."