Words by Abi Scaife
The world of medicine can be overwhelming. All the ‘-cillin’s and ‘-cycline’s are baffling - and that doesn’t necessarily change when you are diagnosed with a long-term health condition.
“I was working - I was superwoman. I was 43 at the time, I have two children. I worked full time, I was the taxi, I cooked I cleaned - I could do everything,” explains Linda Elsegood, who was diagnosed with MS - Multiple sclerosis - more than 20 years ago.
But it's probable she began suffering from MS several years before her diagnosis, when the trauma and shock of her mother’s heart attack - one she wasn’t expected to live through - is likely to have triggered her MS.
According to the NHS: “Multiple sclerosis (MS) is a condition that can affect the brain and spinal cord, causing a wide range of potential symptoms, including problems with vision, arm or leg movement, sensation or balance.” MS is a lifelong illness - though there are treatments, there is no cure.
“I got double vision, I lost the hearing in my left ear, the left-hand side of my body was numb with pins and needles,” explains Linda. “I couldn't think, I couldn't hold a conversation. I was like somebody that had had a stroke. I slurred my words I got everything muddled and back to front. It was very depressing.”
Linda was finally diagnosed with MS and three years later, her regular relapses led the doctors to diagnose her with secondary progressive MS. Her doctors claimed there was nothing more that could be done - that this was just how life would be.
“With this type of MS your disability gets steadily worse. You're no longer likely to have relapses when your symptoms get worse but then get better,” states the MS Society.
“I did contemplate ending it all,” admits Linda. “I was in so much pain - really, really bad pain. I called my doctor and he came out, and he brought me some very, very strong painkillers and a glass of water. I said to him, ‘How long do you think it will be before I start to feel any better?’ And he said, ‘Well, I think if you were going to would have done by now.’
“I thought ‘I just can't live with everybody feeling sorry for me.’ I'm a workaholic. I like to achieve things - and I couldn't achieve anything."
Linda wasn’t happy with what the doctors said - and through the fatigue that came with her MS, in the early 2000s, she began researching MS and its treatments, connecting with people from all over the world who were struggling, just like her. It is then that Linda came across something called Low Dose Naltrexone (LDN).
“I knew there must be other people in a similar situation to myself, but I needed to find them,” says Linda. “I found some people with MS in the US who were similar to me and they were all saying ‘Have you heard of LDN, try LDN - it's not going to do any harm.’ What had I got to lose? Did it matter if it could possibly do me some harm because there was nothing else to try anyway?”
Low Dose Naltrexone is a drug that is mainly used to treat opioid and alcohol addictions, however, it has some incredible benefits when used to treat other illnesses. It is often used to treat psoriasis and, as Linda discovered, can be incredibly helpful for treating MS.
After some time, and some shopping around for a Doctor that was willing - and permitted - to prescribe the drug, Linda was able to try LDN.
“At that time living in my head was similar to living in a television set that wasn't tuned in,” explains Linda. “It was completely fuzzy, the sound wasn't right. I couldn't think or process anything properly. It was such a struggle. Three weeks after taking the LDN, it was as if somebody started to tune in to the television.”
After 18 months of being on LDN, Linda’s life was fully transformed, and she was finally well enough to work again - something she had been missing for a long time.
“Did I want to go through all of that and go back to work?” Linda remembers asking herself. “Or did I want to help those people that were in that deep dark place that I was in, but I managed to get out of - people that have been told there's nothing more that can be done? So that's what I decided to do.”
Linda went on to set up the LDN Research Trust, a charity that campaigns to initiate clinical trials of Low Dose Naltrexone for autoimmune diseases and cancers, as well as to educate people about LDN.
So far, Linda and the LDN Research Trust have helped over 100,000 people, and continue to campaign for this life-changing drug to be taken seriously. Through hard work by Linda, her charity and others that believe in the drug, LDN is now available far more widely on the NHS, and helping more people than ever.
At Smiley Movement, we like to elevate the work of charities across the world. Here are three charities whose causes align with the themes in this article.
MS Society UK. This charity helps to distribute multiple sclerosis news, information, research, and support for everyone affected by MS. Find out more.
Multiple Sclerosis Trust. This is a UK charity that helps make sense of MS, supporting those affected by MS for the last 30 years. Support them here.
National Multiple Sclerosis Society. The National MS Society is bringing the world together to cure MS for every single person — as fast as possible. Learn more here.