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Multiple Sclerosis: friends & family experiences

First symptoms of MS

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.’

 

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.

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.

Age at interview: 63
Sex: Male
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My wife started getting symptoms approximately 40 years ago, I would say. Went to the doctors and was eventually diagnosed with having all sorts of things like trapped nerves, and... ear problems and everything else, but... This continued on till around thirty years ago. It began to affect greatly, she was going to work with one eye closed and limping along, and of course she had very little feeling in one leg. She had double vision and the doctor was still saying things like, “Oh, it’s nothing important. You know, have some antibiotics.” And eventually it got so bad that she was even accused of turning up to work drunk, because of the way she was walking in, and in the end, she sort of insisted with the doctor that this was not good enough, obviously, and the consultant came round on Christmas Eve, and said, “Oh yes, you have got MS.” 

I think the biggest problem was she, with the double vision and with unable to walk properly, with limping around and with her arm, not able to do things, it was more infuriating for her, because she didn’t know what it was. And not knowing what it was, of course, it could have been a brain tumour, it could have been a cancerous growth. It could have been anything of this nature. She knew, as you do, when it’s your own body, she knew for a fact it was not an ear infection or a trapped nerve, which is what she was being fobbed off with. So in real terms it was quite difficult to live with. Not knowing what was the problem meant that she didn’t feel able to cope with a lot of with a lot of life. But she was determined she would.
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 
 

Emma describes her husband’s symptoms of vomiting and headache. She thought at first they were caused by food poisoning or alcohol.

Emma describes her husband’s symptoms of vomiting and headache. She thought at first they were caused by food poisoning or alcohol.

Age at interview: 37
Sex: Female
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To be honest I think our experience was a little bit different to what I read from other peoples’ experience. For my husband, it was literally from one day to the next one, more or less. It all starting really on a Saturday night. He, he went out with friends he might have some drinks but nothing like being extremely drunk or that, you know, a couple of beers or three beers with friends. And he came back and, on that Saturday and that night apparently he was vomiting a lot. Ah, so because of the vomiting we thought it was food poisoning. So on Sunday he went to work as usual. He, he felt not, not that OK but, but we related everything to the food poisoning that we thought it was.

Sunday passed, Sunday, in the afternoon he was better. He then, at the time he was studying in [place name] to become a pilot. So Sunday afternoon, eight, eight pm or something like that, he went to [place name]. On that Monday he actually had to do one of those driving awareness courses, because recently he has some points on his license and he likes speed and all that stuff. So, he’s not very good at that, on that Monday it happened that he has to do, he has to go that course and he finished the course at about 10pm at night and he came back home in [place name] because he was living in [place name] at the time during the week 

He called me. Everything was fine as usual, everything fine, I’m going to bed, I’m going to have dinner and go to bed, tomorrow I have to go school again, blah, blah, blah. And then the following , morning, Tuesday I went to work and at half past eight or so in the morning I received a phone call from him saying, ‘I have had a horrible night, I have had a very bad headache. It’s very strange I never have this before.’ And to be fair we’re not the kind of persons like he goes very often to the hospital, we don’t take medicines, we don’t, I didn’t even know my GP, I mean, we don’t really kind of paranoiac people. So I told him, you know, it might be nothing, you know, this bad headache it might be something that you ate, what about this kind of excuses, do, do you think. Say, wait for a couple of hours, stay at home, go to sleep, have a paracetamol wait for a few hours and then you call me back.
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*.
 

Jeff’s wife had minor symptoms such as tingling but they thought little of it until, one night, she got a severe headache while they were camping with their two small children.

Jeff’s wife had minor symptoms such as tingling but they thought little of it until, one night, she got a severe headache while they were camping with their two small children.

Age at interview: 62
Sex: Male
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I suppose we’ll start back in early 1981. My wife had been perfectly healthy, in fact never seemed to have suffered from any illness whatsoever. If there was any stomach bug, colds, flu going around, she’d never catch it. But she started to get some strange symptoms. Perhaps when she bent her neck down get a buzzing sensation in the back of her spine, but didn’t think there was anything worth complaining about or investigating. It just was a thing that happened and then suddenly went. 

But these symptoms seemed to get slightly more frequent and came to a head in the summer of 81 when the family, my wife, my son was then I think aged 6 and my daughter aged 5, went on a camping holiday on the south coast of England. And possibly the second or third night on the camping holiday I was woken at 1 o’clock in the morning by my wife complaining of severe, very severe headaches on the top of her head and all across the top of her head, a blinding, I think she sort of described it as a sort of migraine, but far worse. And what do you do? You’re in the dark, in a field, 1 o’clock in the morning and away from home.
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.
 

Nicola remembers many incidents, including a car accident when her mum couldn’t feel the pedals. She went on to have problems with walking, speaking and seeing.

Nicola remembers many incidents, including a car accident when her mum couldn’t feel the pedals. She went on to have problems with walking, speaking and seeing.

Age at interview: 32
Sex: Female
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I remember quite a few incidents. Because I was about, I think I was about 11 or 12 when mum was diagnosed and I’d just started at a new school, so it was all quite, I was quite nervous about making friends and, you know, getting on with the other children and stuff. And I remember a couple of incidents. One of them was when she, what she first started to experience was kind of numbness in her left, I think it was her left side, her left leg, so, no, sorry, her right, sorry, her right, no, so when she was driving she couldn’t feel the pedals and so we had a car accident one day. It was when we were coming away from the school, and so that caused quite a bit of drama. 

So, so that’s one of the things, kind of the things I remember about first thinking, “Well, something, you know, something’s not right and mum’s obviously not well.” And she started to limp a little bit. And I remember going on holidays and she couldn’t walk very far because it would be, it would be quite hard work for her. And then I think she had one relapse that was quite bad and she went into hospital. And she lost, I remember she couldn’t speak very well and I think her eye, her eyesight went a bit funny as well. All down one side became, became quite paralysed. And I remember one of the teachers…I was at school, when one of the teachers came in to the classroom and said, “Oh, oh, Nicola, you must, you must come and, and see, come, your mum’s been admitted to hospital.” And the teachers were all really sympathetic and looked after me. So that, that has quite a strong memory for me actually. 
 

Symptoms such as tingling and balance problems got steadily and subtly worse for Anthony’s wife, causing them both to worry.

Symptoms such as tingling and balance problems got steadily and subtly worse for Anthony’s wife, causing them both to worry.

Age at interview: 43
Sex: Male
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The first idea we got that something was, was wrong was when my wife started to feel slightly numb at the end of her fingers and at the end of her toes but only on the left side of her body. So, slightly odd. We knew that wasn’t, obviously, normal but it was, it was a case it was just odd rather than causing a problem to her in any, in any way. Obviously, it was worrying because, after several months, it hadn’t gone away. It was still there and for quite a while it wasn’t really a problem. My wife used to go to the gym a lot and used to do jogging and aerobics and was very, very fit. We used to do a lot of walking. But since the kids had come along we hadn’t done so much of that sort of thing anyway but we still enjoyed it. 

But it sort of crept up on us really in that it didn’t go away and used, it was getting steadily, very subtly worse and it was affecting my wife’s balance and her sense of touch and it was like gnawing away at the back. We knew something was wrong but we didn’t really know what. It was difficult.
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.
 

John’s wife had been an athletic young person, but then for a few years she started to seem occasionally unwell. Her sudden inability to sign a cheque prompted a visit to the doctor.

John’s wife had been an athletic young person, but then for a few years she started to seem occasionally unwell. Her sudden inability to sign a cheque prompted a visit to the doctor.

Age at interview: 71
Sex: Male
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I married my wife in nineteen sixty three and she always seemed to be perfectly healthy. In fact, she, she was quite an athlete. She was a very good swimmer. She played in a hockey team. She was an extremely good high-jumper and seemed to be in very, very good health indeed. We had two children. My son was born in nineteen, our son was born in nineteen sixty six and our daughter in nineteen sixty nine. Unfortunately, our daughter died in, in the year two thousand so we now just have the one son and, and three, grandsons. 

As I said, [wife’s name] was very healthy and we moved to [place name] in nineteen seventy four because of my career in the fire service. Now, just prior to that, she didn’t seem to be particularly well on occasions but this was only probably from about nineteen seventy three onwards and it was nothing serious and nothing very significant. We settled in, in [place name] in a little market town called, called [place name] and [wife’s name] health did seem to deteriorate. It was very difficult to put our finger on anything in particular but she just didn’t seem particularly well. And then one thing that always sticks in my mind is that, on one occasion, she was signing a cheque and she suddenly said to me, “I can’t sign this cheque.” And I said, “Hang on a minute, you mean you don’t want to.” Because it was something that, [wife’s name] was, paying for and she said, “No.” She said, “I’m sorry. I just can’t write my name. I can’t, I can’t sign it.” 

Well, eventually she did but it looked nothing like her signature at all and, indeed, I had to explain the situation to the bank before they would do the transaction that needed to be done and she didn’t seem to be, again, particularly well so we went to see the doctor. And the doctor gave her a pretty thorough examination but didn’t come up with anything very, very conclusive at all and, after a few weeks, she seemed to be back to herself again and everything was perfectly normal. She was back driving and everything seemed to be, seemed to be okay. But then maybe a couple of years later she, again, seemed to be off colour and not particularly, not particularly well. But, after a few weeks, she recovered and everything seemed to be fine and didn’t even need to see the doctor on, on that occasion.
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.
 

Paul strongly encouraged his wife to find out why she kept falling.

Paul strongly encouraged his wife to find out why she kept falling.

Age at interview: 76
Sex: Male
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Well, my wife was actually diagnosed in two thousand and one with MS but in, two or three years prior to that she was having falls outside and I noticed that she wasn’t picking her feet up. At least one particular foot, I think it was the right foot, she wasn’t picking it up properly. So any slight raised pavement or anything, she would trip and she would tend to go over and if she falls with the bones being, as we later found out, affected by osteoporosis she would have breakages and she broke her arm and her wrist and her finger and so on. I said, that we’ve really got to find out what the problem is, why she’s having these falls, because at that time we didn’t know that it was MS, and we, we saw our GP at the time and he didn’t recognise what was happening, couldn’t understand quite why she was falling over and it was only when we were walking down the road one day and we saw our old doctor, who lives nearby, long since retired, and we were talking to him and he said, “How, how are you?” and so on and she told him and he said, “Have you thought of seeing a neurologist?” Which we hadn’t.
 

Norma felt that she had to intervene by talking to her son’s GP about his symptoms, which included difficulties walking and getting to the toilet in time.

Norma felt that she had to intervene by talking to her son’s GP about his symptoms, which included difficulties walking and getting to the toilet in time.

Age at interview: 70
Sex: Female
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In the early 1990’s I saw a behavioural pattern in my eldest son, Shane and I just couldn’t understand why after working and being so full of energy would he suddenly start going to bed at midnight and would still be asleep at 5 o’ clock in the evening. I just could not work that out. However, another pattern developed and that was not being able to walk in a straight line. He had a gait in his walk. He developed tremors in his hands and he would not admit to all this, it was happening but he just felt that he had to be independent and carried on. If he was going through the door he would, doors, he would go sideways then straight on. 

I asked him to go to the doctors which he did. He was given Baclofen which was for spasticity or to slow the tremors down. However he developed more symptoms, was not able to hold his urine also not being able to walk fast enough to get to the toilet to empty his bladder.

He kept going to the doctor getting these tablets, repeatedly. After a year I decided that regardless of his age I just needed to intervene. What I did was to write a letter to the doctor telling him of the symptoms I had seen Shane had developed. He wrote back to me saying he would not be able to do anything, Shane would have to tell him himself because he was over 18. I sent another letter telling him all about the symptoms. Before he replied I made an appointment with him for myself and for Shane on the same day. 
 

Alice knew about MS from a project at work. She could see some symptoms in her partner. He didn’t agree with her assessment of his symptoms, but he agreed to see the doctor.

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Alice knew about MS from a project at work. She could see some symptoms in her partner. He didn’t agree with her assessment of his symptoms, but he agreed to see the doctor.

Age at interview: 35
Sex: Female
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MS entered my life, strangely, professionally and personally at exactly the same time. I was actually working on a project about it. So I was reading lots of books on the subject and I noticed that my partner at the time seemed to have lots of the symptoms, which he denied, and I kept reading, referring back to these books thinking, “This is too much of a coincidence.” And urging him to go to the doctor, which he did. The results were invariably fine but this carried on for such a long time that he had to go back on several occasions and I think it took about a year and a half to get a diagnosis. It was a long time. Him being reassured, me being paranoid, me constantly pushing him and eventually, the news came in.
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.
 

David and his wife talk about the possibility that certain events in her younger life were caused by MS, but he thinks you can’t be certain about it.

David and his wife talk about the possibility that certain events in her younger life were caused by MS, but he thinks you can’t be certain about it.

Age at interview: 49
Sex: Male
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In retrospect, did you think that she’d had some symptoms that might be related but were unrecognised at the time?

I think there’s a potential, when you actually look at all the things back in hindsight, you think that there is that possibility, but I’m not a doctor, and I wouldn’t like to say that that’s definitely the case. But when you look back at certain events, I mean, I have known Sandra since she was 18. I know that she didn’t used to behave like that, or didn’t react to certain things in a certain sort of way before. And I think there’s always the possibility, we talk about it quite a lot, to say I wonder if this was that and that and that. But how would a doctor diagnose it? How would you dia… you only look at these things in hindsight. And it all builds up so to speak. But I, I don’t know.

It would explain a lot of things, though on the other hand, that might just be may be a very convenient excuse for the fact. Certainly when you go to work, I mean Sandra, you know, we work really hard. The jobs we have are quite, becoming very stressful and therefore yes, I mean stress does funny things to people, so it doesn’t mean to say that it’s MS, it’s just that it could have been, and it would explain why certain things didn’t really work out very well at that time. It was harder to deal with. But that’s just in hindsight. It’s difficult, difficult to say. 

So, I think, at the moment, if you have something quite bad, you think that’s another big episode and then you reach a, reach a certain sort of level. I mean you can quite clearly see it now. It’s sort of staggeringly obvious now. But prior to 2006 I wouldn’t, I would hesitate. Lots of friends have said, “Well, that probably explains certain things.” But I don’t know, I’m wary of joining up the dots too much because there’s so much goes on in life that you know, you’re just blaming it on one illness. I don’t think that would be right, to be honest.
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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