Multiple Sclerosis: friends & family experiences

Decisions about treatment for MS

Everybody we spoke to knows that there is no cure for Multiple Sclerosis (MS). Depending on the stage and type of the illness, various treatments are available which can slow its progress or control its symptoms. Decisions to have these treatments were negotiated between the person with MS and their doctors, often with the active support of their partner. Sometimes all concerned agreed that the best thing was to have no treatment because the side effects might be worse than the symptoms. 

Because MS is unpredictable, a treatment which seemed to work for a while often seemed to become less effective over time and was stopped. Sometimes the side effects of a drug were so bad that the person stopped taking it and wouldn’t have it again. Occasionally, people talked about their relative, partner or friend wanting to try a drug which their doctor didn’t think was right for them. Some people suspected that these decisions were funding related.
Several people with MS had taken part in drug trials. Partners encouraged this, for the sake of their spouse but also to contribute to knowledge for the sake of other people with MS. 

Many also used non-drug treatment such as physiotherapy, oxygen treatment, yoga, massage, reflexology and a healthy diet with fish oils and vitamins. These were all seen as beneficial, though some people said their partners didn’t always do their physiotherapy exercises. Karl said that his partner tried acupuncture when she was first diagnosed but there was no noticeable effect. Some people had tried unconventional treatments such as drinking sunflower oil, but most were sceptical about the value of anything that was marketed as some kind of miracle cure. A few people tried a treatment against the advice of their doctor.

Some people we spoke to very actively looked for information about treatment and used the evidence they found to negotiate particular treatments for their relative. Both Bernard and Paul Z found research articles on the Internet and showed them to consultants. Bernard’s story shows that people react differently to any given drug, and that drug availability changes over time.
Emma’s husband decided which treatment to have, but Emma helped him to decide by finding information and using her scientific background to help him understand it. She also makes sure that he eats specific foods which she thinks will help:
Sometimes the ability to pay for treatment, or to get funding from the relevant part of the NHS, was important. Robin advises not to buy your own medicines, but to get them on prescription; but Betty, with shrinking savings and little income, has to get low dose naltrexone on a private prescription and is awaiting a decision on whether the PCT will fund cannabis spray (Sativex) for her partner. Jeff’s wife had to go to a different city for botulinum toxin (Botox) treatment. It was uncertain for a while whether Emma’s husband, a non-EU citizen, would be eligible for treatment. Stella feels grateful that, despite the drop in their income since her partner had to stop working, they can still afford to pay for alternative therapies. Kay Z’s husband could get beta interferon from America (through relatives living there) before it was available in the UK.
Some people were optimistic about the prospects for new treatments based on scientific research. Treatments that weren’t based on evidence were generally disapproved of but some people said their relative had tried them, or wouldn’t discount trying them, anyway. Ian’s wife decided against her doctor’s advice to have a controversial treatment to widen the vein which takes blood from the brain (CCSVI).
Some relatives had heard about people who had ‘overcome’ their MS. Most thought that this probably meant they had a mild form of MS with long periods of remission, rather than that they had been cured. But it mattered to Stella to hear this, ‘Because we were always told it was something that you have, and you need to make do with it, and you need to accept it. Which is true as well. But then there’s always hope. Always, for anything’.

Last reviewed July 2018.
Last update July 2018.
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