Multiple Sclerosis: friends & family experiences

We spoke to husbands, wives, partners, parents, children, brothers, sisters and friends of people who have had Multiple Sclerosis (MS) for as long as 50 years or as little as 6 months. Their stories often began with the first time they, or the person with MS, had noticed some symptom or sign that things weren’t right. They talked about a wide range of symptoms including; changes in vision (from blurry eyes to complete loss of sight), extreme tiredness, pain, difficulties with walking or balance leading to clumsiness or falling, changes in sensation like numbness, tingling or even having your face ‘feel like a sponge.’

Sometimes the first symptoms were more sudden. Over a period of two days Ann’s daughter went from having vision that was ‘a little bit funny’ to almost complete loss of sight in one eye. Emma told us a detailed story of the sudden start to her husband’s MS  Like Emma, some people we spoke to thought or hoped at first the symptoms were something less serious. Louise thought her son’s ‘drooping eyelid’ might be caused by Bell’s palsy. Ann thought her daughter’s tiredness came from late nights or exam stress. Sometimes the symptoms were ignored if they only happened once or if they didn’t appear to cause too much of a problem. For Jeff’s wife, though, her ‘strange symptoms’ got more frequent and then while on a camping holiday she had a severe headache which prompted them to go to the doctor. There is limited evidence that headache is a symptom of MS, but there are a few studies which suggest there may be an association*. On the other hand, some people were worried about the symptoms right from the start, particularly when they feared something that they thought was worse than MS. Sarah and Karl both worried about their partners having Motor Neurone Disease. Stella feared that her partner’s symptoms’ might be due to cancer. When Chez was told by the consultant that her husband ‘either had a brain tumour or he had MS’ she was ‘very, very worried.’ John’s wife had problems with vision and walking for a long time before eventually being diagnosed with MS. Living with uncertainty was difficult and they both worried that she might have a brain tumour.

Very often there was more than one symptom and the effects added up over time. Nicola has strong memories of being a teenager and noticing her mum’s various symptoms. Anthony recalls the worry of ‘knowing something was wrong,’ but not knowing what it was. Most people said they remembered noticing quite specific symptoms or incidents but this was not always the case. Symptoms were described as ‘funny’, ‘strange’ or ‘odd.’ Eric’s wife had ‘some things that weren’t diagnosed’ or that were put down to a virus. John’s wife had always been fit and healthy before, but then she just started to seem generally unwell, on and off, for a few years. Robin ‘never noticed anything’ of his wife’s early symptoms and didn’t know anything about her MS until she told him after she was diagnosed. But a lot of the people we spoke to did notice and some were active in encouraging their partners, or children, to find out what was causing their symptoms. Sometimes people looked further back into the past for the start of MS, remembering symptoms that had been attributed to something else, or had been ignored. John X’s wife had a numb leg in her teens which was ‘diagnosed’ as fear of exams. Kay Z’s husband had double vision 10 years before the limp which was diagnosed as MS. Mully’s husband was told by a neurologist that his medical records showed that MS had been suspected when he was a teenager, long before his eventual diagnosis. Ann says that her daughter wonders if she ‘was more tired than she should have been,’ or how much was ‘just normal teenage fatigue?’ David thinks you can sometimes read too much into past events. In some relationships, the person with MS first noticed their symptoms and suspected that they might have MS because another member of their family had it. Robin ‘just didn’t want to know about MS,’ because his wife’s mother had died from it at the age of 58. Eric’s wife, ‘thought she’d got the beginnings of MS because her aunt had it,’ but Eric didn’t know anything about it for years after his wife’s first vague symptoms.

Last reviewed March 2020.
Last update July 2018.
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