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Multiple Sclerosis: friends & family experiences

Getting a diagnosis of MS

The experience of symptoms (see ‘First symptoms’) led sooner or later to consulting a doctor, to having tests and to being given a diagnosis. This wasn’t always a straightforward process and there were a lot of different experiences among the people we spoke to. Diagnosing Multiple Sclerosis (MS) is often a difficult and lengthy process, for several reasons. Firstly, there are no specific symptoms which would immediately suggest the diagnosis and there is no definitive test which would confirm it. Next MS is comparatively rare and it affects people in many different ways. The early symptoms are often quite mild and could be caused by various other conditions. These need to be ruled out before a diagnosis of MS is given. Progression of symptoms over time provides evidence to support the diagnosis.

Many of the people we talked to spoke about their relative experiencing symptoms for months, years or even decades before finally getting a diagnosis. Most people, once they went to their GP, felt they had been referred promptly to a specialist in neurological conditions. Some talked about doctors being fairly sure that their relative had MS within a couple of months. However, not all were referred to a neurologist so quickly. 

 

Mike talks about his partner getting a diagnosis about two years after her first symptoms. They both found it hard living with the uncertainty.

Mike talks about his partner getting a diagnosis about two years after her first symptoms. They both found it hard living with the uncertainty.

Age at interview: 51
Sex: Male
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It was very, very frustrating. From visiting [hospital name] several times every time we visited [hospital name] we came away from there with having been told, “There is a possibility that you do have MS but we can’t fully confirm it” and there was a very big, over that over that two year period, there was a very, very big question mark and it impacted a lot on Jennifer and I think it possibly made her a bit worse. As I say, it made her a bit worse it, her moods were up and down her moods were all over the place. Jenny was very, very frustrated and it, it impacted on me as well. Yeah, it was very, very hard for both of us.

What sort of impact did it have on you?

Well, obviously, because I love Jenny dearly it, it did impact, it did impact on me. As I say me not being able to work I kind of, that was frustrating for me because Jenny knew that I was better off, that I’d worked all my life. Jenny knew, or Jenny felt that she was holding me back whereas from my point of view yes, okay it was holding me back but my main concern was actually Jennifer at the time. So, yeah, it was very, very hard, very hard. And still is. But that particular two years was very difficult. As I say, it, it took us actually moving up to [place name] to actually get the diagnosis, even though it hasn’t actually changed much but it’s nice to actually know what the problem, what the problem is and actually being able to deal with it better from that.
 

After living with MS for more than 25 years, Kate’s husband was diagnosed when they moved house and changed their doctor.

After living with MS for more than 25 years, Kate’s husband was diagnosed when they moved house and changed their doctor.

Age at interview: 75
Sex: Female
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And we went to, we went to three, I’ll never forget this, three different doctors to find out if Bernard could retire. What was the matter with him? No, obviously still no, we still didn’t know it was Multiple Sclerosis. Nobody knew even then, twenty-five years ago, it was Multiple Sclerosis. And the do-, the one doctor said, “Oh, well, I think you’re just having a nervous breakdown.” And I said, “Can’t you..?” I was absolutely, fortunately I was with him, because he, Bernard will never say anything to anyone, will never complain about anything, and I said, “Can’t you see?” I said, “He can’t even fasten up his shoes. He has no co-ordination to fasten up a pair of shoes.” Which he couldn’t. 

And, and actually at that time he couldn’t even get food to his mouth. We would sit at table for ages trying to look normal, all four of us, as he would miss his, , miss his mouth with his food and we’d try to act as if it was quite normal to miss your mouth with your food when you’re eating. And eventually I made this doctor realise how ill he was. And he said, “Oh, I think you’d better take early retirement.” Which was a great relief to us. And really from there we, we’ve managed on our own.

The doctors had never seemed to realise what it is, until we actually came to live here. And that was, I mean we lived on the [place name] for, for many years. But when we came to live here, one young doctor was, was, was, well, yes, one young doctor was very good and said, “I think you ought to go and see a Multiple Sclerosis nurse. You have Multiple Sclerosis.” Well, we knew it was sclerosis of something, but we didn’t know. And we have been to see a specialist here who deals in Multiple Sclerosis. And he did say to Bernard, I must say we went privately because the doctor at the [place name] was, he did say to Bernard, “Well, you’re better off making, not taking any medication. Because you’re managing so well without it.” He said, “And the side effects of medication will be worse than the actual managing.” 

So, and then this young doctor suggested that he, that he went to see an MS nurse. And from then on we’ve had a tremendous amount of help. And I’ve learnt more about, in the last five years since we’ve been here, more about Multiple Sclerosis than I’d known in all the years. Now I re-, realise lots of things that have happened to Bernard are quite normal for people with Multiple Sclerosis. But it hasn’t been an easy, an easy ride, trying to act normally. 
 

Emma describes a short, intensive period of investigations leading up to her husband’s recent diagnosis.

Emma describes a short, intensive period of investigations leading up to her husband’s recent diagnosis.

Age at interview: 37
Sex: Female
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And we were very, very lucky over here, in the hospital here, because they actually the doctor immediately identified something that wasn’t actually matching the food poisoning profile.

So he con, he contacted, it was 12 am already, he contacted the neurology on, on call. The neurologist on call came, started to do some tests on my husband, the physical, the, you know, the, tactile test [gesturing ] and all that. He said that he has to be kept overnight by this time it was 2am at night and the next day they did the first MRI which I thought, I think it was on the spine They, obviously detected something but they didn’t tell us anything. The next day they did a brain scan and, so that, the brain scan was on Wednesday, brain scan on Thursday and on Friday they told my husband that they were, they didn’t diagnosis, give the final diagnosis at the time but they did say that there were a number of titulations in the brain that there were some lesions in the cord and if this happened again it was definitely more or less diagnosis confirmed but at the time they couldn’t say because it was only the first attack or relapse.

Also the consultant has booked for a second MRI just before the ophthalmologist, neuro- ophthalmologist appointment. And the results literally were they are from the previous day or something like that, and, they, the ophthalmologist looked at it and in fact there were more lesions from the previous MRI. So with that, all this information we were at the end of December more or less, 20 December the appointment with the consultant, the, the second follow up appointment with the consultant after the three months was at the beginning of January, so we got the information on hand, the neurologist said, the consultant said, “It is what it is. It’s MS.’
 

Anthony’s wife looked for a second opinion after about 5 years of not having a diagnosis.

Anthony’s wife looked for a second opinion after about 5 years of not having a diagnosis.

Age at interview: 43
Sex: Male
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And then, after a while, we went to see the doctor about it and he referred us on to a specialist, who decided a course of steroids would be a good idea, and so my wife went into hospital. It was for a, a three day course of steroids, very intensive course of steroids and not particularly unpleasant but it did the trick and everything was fine.

But the feeling that my wife had down the left side of her body it improved after the steroids but it didn’t, it never got back to normal. It was, it was never the same and then something rather awful happened in that my wife caught food poisoning, campylobacter it was, and this made her very, very ill and, looking back now, after that the symptoms did get progressively, slowly worse. But after that bout of food poisoning it was never quite the same again. She took a bit of a, bit of a nosedive after that. That’s probably a too dramatic way of putting it because it was just after the food poisoning she was, there was clearly, you know, it had taken a step further on. 

But still, we didn’t know what it was and the doctor and the hospital wouldn’t, they seemed to be very, very cagey about putting a label on it at all and we never really thought a lot, awful lot about that and we should have done, thinking about it now, but we just assumed it was something that my wife would have to live with and it didn’t appear to be getting really bad. It was, it was certainly there and slightly not debilitating, but slightly restrictive because my wife had been so, so fit and now didn’t feel like she should be doing the sort of things that she was. It didn’t feel right somehow because she didn’t have the balance and to a certain extent she didn’t have the strength either. 

Well, after the first course of steroids, which helped, I don’t remember my wife ever saying that she was a hundred per cent back to normal again. She always used to describe it as ninety five per cent. 

And we just got on with life and I think maybe there’s a tendency to hope that everything is going to be okay and assume it might be a temporary thing and because the steroids had made such an improvement it was a case of, “Well, whatever it is we can always go and have this again.” 

The, one of the milestones I mentioned earlier was the food poisoning because that meant that my wife was very, very ill and it was after that I started to notice that her mobility wasn’t what it was. She couldn’t walk as smoothly as she used to be able to. She complained about her balance a lot more and again, she had a course of steroids, so a whooping great big dose of steroids in hospital via an infusion drip. But it was puzzling because all the time they wouldn’t say what it was and even the phrase, ‘singular sclerosis’, I seem to remember, was bandied around which, looking back, seems a ridiculous thing to suggest because, I seem to remember, that the way it was explained at the time was that it can’t be MS because that’s when you have multiple parts of your body affected and my wife didn’t.

But I think it was after, I think it was after the third episode that she had, of this, we thought we really ought to find out more about this now but our consultant still wouldn’t label it. He wouldn’t, you know, he said, “We don’t know what it is.” And this was about five years in, as I say, and so things, up to that point, had only deteriorated very, very slowly with the exception of the food poisoning episode when there was definitely something amiss after that. 

But I guess after that period of time we just decided that, you know, tell us what this is. Tell us straight what the chances are of it being MS and then, at least then we know and we can start to get our heads around it and research it, look up about it and, from my wife’s point of view, to start accepting that’s what she had, rather than having to try and explain away what she had because, if the truth be told, she didn’t know because they wouldn’t tell. They wouldn’t tell us anyway. I suspect that they always suspected that’s what it was. I don’t believe somebody who’s in a consultant position sees symptoms like this hasn’t seen them before but it was his total reluctance to put a label on it, to diagnose it properly that, in the end, we just said, “No, forget it, you know, we want a second opinion on it.” And the second specialist gave us that opinion. But this was, as I say, years down the line. 

GP referral to specialist services was sometimes prompt, particularly where the GP was knowledgeable about MS, but people also told us stories of GPs not recognising symptoms, being reluctant to refer or not taking symptoms seriously. This may be because symptoms can be vague at first and may suggest other, more minor, conditions. GPs may not want to worry people unduly, so they look first for other possible explanations.
 

A GP explains what they would do if someone come to see them with symptoms that may be MS.

A GP explains what they would do if someone come to see them with symptoms that may be MS.

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As a GP what would you do if somebody presents with symptoms that you think might be MS?

It’s very difficult. MS is not an easy diagnosis to reach. By its very nature MS is something that presents with different symptoms in different parts of the neurological system, in different parts of the brain or the nervous system at different times. So when someone has a symptom it’s always difficult to say, ‘Is this MS?’ As time passes they collect different symptoms at different times some of which may have got better and then it becomes clearer that this could be MS. There are some very classic symptoms for example blurring of the vision in one eye which comes on and then gets better over a period of about 6 weeks which should really raise alarm bells, ‘Could this be MS?’ 

The problem is really how much do you share with a patient because if you are very uncertain then it can be very distressing for a patient to have the worry of multiple sclerosis raised when actually that turns out not to be the case. The other extreme is nobody saying anything until several episodes of different things have happened and then the poor patient finding out in the end that over several years everybody else has been thinking MS but nobody has told the patient. And somehow as a doctor you need to navigate between these two paths and be as honest as you can about what you think might be going on without unduly or unnecessarily distressing your patient or making them worry when it’s only a faint possibility. So I think it’s a really difficult thing to know what to say. On the whole if someone comes to me with symptoms that I think may well be multiple sclerosis I will refer them to a neurologist and I will also explain the reason that I am referring to the patient and what’s likely to happen when they see the neurologist. Most patients will then have a scan of some sort, having been examined by the neurologist, just to see whether the current symptoms they have may be related to MS.
 

Kay talks about her brother’s symptoms being dismissed by the GP as hypochondria. He went to a private doctor instead and was diagnosed.

Kay talks about her brother’s symptoms being dismissed by the GP as hypochondria. He went to a private doctor instead and was diagnosed.

Age at interview: 38
Sex: Female
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It was eleven years ago roughly. My brother had been having some issues with his vision. He’d also been experiencing quite a lot of clumsy occasions like walking into doors or doorways. So first of all he, he went to get his eyes tested and although he’s short-sighted he was wearing the correct prescription. So then he went to see his GP and told him about some of the things that had, he’d been experiencing. His GP unfortunately called him a hypochondriac and told him to go away. Fortunately for my brother, as he was a, a senior manager for a retail company he was entitled to private health care. So he, he went and had some tests at the hospital and they did an MRI scan and discovered that he’d got MS. 

Paul Y says his GP could not get to the bottom of why his wife kept falling and getting fractures. When they were walking down the road one day a neighbour, who was a retired doctor, suggested they ought to see a neurologist. 

Sometimes there were periods of treatment before a clear diagnosis was given. Seeing if someone responds to a treatment can help doctors decide if it really is MS. Paul Z, Dave, Anthony and Ray all talked about their wives having treatment with steroids before being given a diagnosis. Health professionals sometimes accidentally let slip that the treatment was for MS. People often thought that doctors were reluctant to ‘put a label’ on the diagnosis, whether this was because they felt unsure or because they were trying to protect the person from bad news. Diagnosis is now much more open. For example, since 2003 it has been government policy that doctors should offer patients copies of letters that relate to them.
 

Anthony and his wife didn’t know that she might have MS and were surprised to hear a hospital nurse mention it before she had been diagnosed.

Anthony and his wife didn’t know that she might have MS and were surprised to hear a hospital nurse mention it before she had been diagnosed.

Age at interview: 43
Sex: Male
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I can’t actually remember at what stage she had the MRI scan, whether it was in conjunction with the positive diagnosis that we eventually got. But if there’s one thing I’ve learnt with MS, it’s a very inexact science and maybe that’s why the specialist was reluctant to label it. I don’t know but, like I said, it affects so many people in so many different ways that maybe it’s not something that’s easy to diagnose. I don’t know. Maybe I’m now making excuses for the original specialist we had. I don’t know. But we eventually got the diagnosis that we feared but at least it was a little easier to get our heads round it when somebody with letters after their name had said, “Yes, it’s this.”

So had you both yourselves thought it might be Multiple Sclerosis?

Yes.

Without anybody else saying that to you?

Yes. But maybe you tend to put those thoughts to the back of your head a little bit and, you know, it was if ever somebody enquired after my wife’s health we never said, “This is what we think it is.” Because we didn’t know. You know, that was one inkling that, you know, little thought that probably wouldn’t go away. But we couldn’t say it was that because we hadn’t been told it was that and I suppose you could argue at that stage, it wasn’t that. You know, it was only when it started to get worse that it became something that you could put a label on. I dont’ know but...

And what were your inklings based on? What kind of knowledge or experience of MS was it that made you, made that appear in your minds?

Well, the one thing that I remember stands out in my mind was when my wife was having a course of steroids in hospital and one of the nurses came in and she was not a nurse I’d seen before and I think she slipped up because she said, “Oh yes, you’re in for your course of steroids for your MS aren’t you.” Or words to that effect. I forget the exact wording and my wife sat up and said, “I haven’t got MS.” And I said, you know, “She hasn’t got MS.” “Oh right, well.” This nurse sort of like quickly retracted the comment, looked at the notes, looked a little flustered and that was that. But she’d obviously assumed. She’d obviously seen the symptoms before. She’d seen this course of treatment being give to somebody with MS before.

So she just put two and two together and looking back, that was the first time when I think it really started nagging at the back of my head, you know, “This is what she’s got.” And it’s odd that, it should first, you know, come up in that way, when already for quite some time, you know, it was referred to as a neurological condition. That’s the only label that our specialist would put on it as I remember. I mean all this is a long time ago now but, you know, he was an expert at beating around the bush I think, looking back.
 

Doctors had apparently known for years that John’s wife had MS but had not told them. He thinks maybe they were trying to protect them from the news.

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Doctors had apparently known for years that John’s wife had MS but had not told them. He thinks maybe they were trying to protect them from the news.

Age at interview: 71
Sex: Male
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In nineteen eighty four, we moved to a little market town in [place name] called [place name], again, to do with, to do with my job and, of course, signed on with a new doctor’s practice and the same thing occurred again. [Wife’s name] was really off colour, went to see the doctor, a lady doctor, and this time the doctor said, “Right. I’m afraid it’s time we put the cards on the table.” Now, previously, the medical authorities had given us a name of something that was wrong with [wife’s name]. I think they called it neurosis, if my memory serves me right, but they certainly didn’t say Multiple Sclerosis or anything like that. So when we saw the doctor at [place name], the doctor said, “Well, it’s time to put the cards on the table. I’m going to tell you what is wrong with you and I think you’re going to get a bit of a shock. You’ve got Multiple Sclerosis and it isn’t getting any better.” 

After the doctor in [place name] told us that my wife had MS she was sent to see a consultant in [place name]. This was within a few days. The consultant was not satisfied with the diagnosis and recommended a lumbar puncture to make sure. This was done and the consultant confirmed that my wife did in fact have MS.

Now, obviously, the medical authorities had been aware, aware of this for quite some time but they hadn’t told us, probably because they thought at the age that we were, it would have an adverse effect on life so that, that was why they didn’t tell us. I’ve got no argument with that at all but when the doctor said, “You’ve got Multiple Sclerosis. It isn’t getting any better.” And the doctor said, “Now, I’m going to tell you now, you’re certainly not going to like it, in a very short time, maybe a couple of years from now, you’re going to find yourself in a wheelchair because that’s the way this illness seems to be going.” 

I think it was withheld because the medical authorities probably thought if they said the word MS we may not have tried to do as much with our lives as, as we could. I think that’s the main reason but there’s [sighs] there’s something here that is, that is very strange. My wife’s father was ill in, in the part of the country where we used to live and one Saturday night my mother-in-law had to send for the doctor. 

Now, I am told that the doctor came and treated my father-in-law. Now I wasn’t there, and this is second hand information to me from my mother-in-law, but the doctor, this is in the early hours of the morning, had a cup of tea afterwards and said, “Oh, it’s your daughter that’s got MS.” So my mother-in-law said, “Well, hang on a minute. How do you know that because my daughter left this practice when she was about twenty four years old and moved to [place name]. How do you know?” The doctor sort of looked a bit sheepish and then said, “Oh, I think I might have slipped up here.” 

Now, it must be that this had been diagnosed before, when [wife’s name] was a very, very young person indeed, and I know there is always some difficulty in medical records being shipped from one county to another and it may be that there were still some records there that the doctor was, was aware of. So it could be that [ name] has had MS for a very, very long time but it didn’t show itself in, in any way shape or form, until round about nineteen seventy four.
 

Ray recalls that the visiting nurse told his wife she was having steroids for MS. When the nurse realised his wife had never been told it was MS, she said she had mixed her up with a neighbour.

Ray recalls that the visiting nurse told his wife she was having steroids for MS. When the nurse realised his wife had never been told it was MS, she said she had mixed her up with a neighbour.

Age at interview: 17
Sex: Female
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Ray: Things just moved on really, really slowly and before your mum was actually diagnosed there was various things that had happened, we actually had a local nurse come in to inject mum with steroids to see if they could perhaps the steroids would build her up so they might clear off and might never come back again. Because sometimes people can have attacks of MS in the early stages and maybe may go for years and years without another one.

But we still didn’t know at this point your mum had got MS until a nurse come and give the wife injections and the one day she said about, oh she said, “I’ve come to give you your injection about MS,” and, [name] she said, “What, what do you mean, MS?” And the nurse realised she’s made a mistake, there was someone that lived four doors away from us who was tall and blond, almost a mimic of your mum, but she know she’d got MS and she was injecting the both of them at the same time...

So, anyway, “No, no it’s not MS”. So she, she went away and, and eventually it, as I say, your mum was diagnosed with it and when she, they start, put her on these steroids she was really, really burned out and, and in the early stages, we’d only been married sort of two years then and the fatigue was, was so great that she was managing to work but when she come home from work she was off to bed at eight, eight o’clock at night and sleeping right till time for work again. But, so it was work, sleep, work, sleep all the time.

Anita and Carole were teenagers when their mothers were diagnosed with MS. They remember being told very little about the illness or what it would mean:
 

Carole was told the name of her mother’s condition but nothing about how the illness would develop.

Carole was told the name of her mother’s condition but nothing about how the illness would develop.

Age at interview: 53
Sex: Female
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Looking back, she’d been staying late at work for a lot of the time. She was a secretary and, in those days, it wasn’t computers so I think she must have been like retyping letters again and again because she kept making mistakes because it’s, you know, it’s hard with the hands to do the typing. And so that’s yeah, we sort of, I remember thinking it’s a bit strange her keep staying late at work and nobody said. In those days, people didn’t talk about things quite so much as they do now and our family, in particular, was very, very quiet about things and when she was diagnosed they just said to us, my dad said, “Oh, your mum’s got MS, well, Multiple Sclerosis.” 

And, and that was it really. We didn’t hear, they didn’t talk any more about it and because of the way they were we didn’t really ask questions and I mean I’m completely opposite. I tell everyone about things, about me and I tell, you know, I ask questions and things but, in those days, for some reason, we just didn’t. And I remember thinking all, all that we knew about it was that the, the cellist Jacqueline du Pre had MS and that’s the only thing that I knew. And in those days, there weren’t books or I mean there might have been books but we didn’t have access to them or computers and things for the internet to find out about it. So all we knew was that our mum had Multiple Sclerosis and, and that was it. Didn’t know how it was going to develop or anything or anything. 
 

Nobody told Anita what was going on when her mother was diagnosed but she remembers tension in the family.

Nobody told Anita what was going on when her mother was diagnosed but she remembers tension in the family.

Age at interview: 37
Sex: Female
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Well, I was probably about eleven years old when my mum got diagnosed with MS. And I don’t actually remember much around that time other than her going to the hospital I remember that on holidays she had [background noise] problems with her vision and she’d also had problems walking. But nobody had actually explained to me that, you know, what that really meant and what, what the concern was. And I don’t really remember her going to the hospital and knowing about that or anyone really having any conversation with me about what it meant. She obviously then got the diagnosis and I don’t specifically remember being told about the diagnosis. But I remember the, the time and I remember the impact that it had on both my mum and my dad and you know the tension actually there was in the family sort of at the time. And I guess that, for a kid at that age, nobody had actually said this is what it is and this, this is what it means.

Some peoples’ relatives were diagnosed abroad, followed by confirmation in the UK. Louise was thousands of miles away in the UK when her son was diagnosed in America.
 

Tony describes how his wife received the diagnosis in Japan. He did not go with her because he didn’t realise what they were looking for.

Tony describes how his wife received the diagnosis in Japan. He did not go with her because he didn’t realise what they were looking for.

Age at interview: 72
Sex: Male
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Well, my wife had been having some interesting manifestations when we were on a Royal Air Force tour when I was an attaché in Tokyo. And we didn’t know what the problem was. She went to a, an expatriate doctor out there, who obviously decided it could be MS. And she was sent along to a consultant, a Japanese consultant at a Japanese hospital. And she, I sent her with the driver, I didn’t go myself because we hadn’t realised that this is what they were looking for. 

And she came back with an envelope with the pictures in it from the scanner, plus “MS confirmed” on the outside. Which came as a bit of a shock to both of us. Anyway I got in touch with the MS Society and I brought [name], my wife home for a follow-up consultation with an RAF consultant, and he confirmed it. 

Having been diagnosed in Japan, there wasn’t any information out there. And so I got in touch by telephone with the MS Society from Japan and they immediately sent me out information and so forth. And then I had to start seeking out information myself, and coming back home and dealing, dealing with them that sort of way. So our case of diagnosis of course is different in that it was on a, an envelope read by my wife and by me, not understanding the circumstances at all. An appalling way to found, find out. But you have to understand we were over there and it, we weren’t treated in the same sort of way at all. 

When we came back here and s-, sort of hooked into the [name] medical services, through [hospital] and so forth and the neurological organisation over there, it took us a time to get in but once we were in they held little sort of meetings, co-, information meetings. And I felt that they were pretty, pretty reasonable at, at helping us, helping us along. 
 

Dave recalls that, years ago, doctors were reluctant to diagnose, and to tell his wife the diagnosis, both overseas and in the UK.

Dave recalls that, years ago, doctors were reluctant to diagnose, and to tell his wife the diagnosis, both overseas and in the UK.

Age at interview: 73
Sex: Male
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It wasn’t until we were working in Saudi, Riyadh that one of the first major symptoms came upon when and we were driving along one evening and she said ‘Why did they change the traffic lights?' not the traffic lights, the sodium lights, I said ‘Well they haven’t’, she said ‘Yes they have, they used to be yellow, they’re not now,’ and in fact she’d lost her colour vision. So we went to the doctors. Now, I’m not saying it wasn’t a good hospital but the carpet went three quarters of the way up the wall and the man who was a senior opthalmologist was supposedly the number three man in the world. And he turned round and he says ‘Well there’s nothing I can do beyond brain probes and I don’t want to do those.’ 

Later on when we returned to the UK and Tricia was diagnosed with MS the neurologist here asked permission of her to have some of his students in, and what he said was ‘Look into that eye, it’s classical retinal scaring, it might as well say, ‘MS.’ And what it was, was that the opthalmologist in Saudi, an American, didn’t want to diagnose and this has been a problem, we’ve talked with other people, that early on certain doctors were taught that they were Gods and if they came upon something which they couldn’t cure give it a long Latin name, tell them to come back in a year in either which case they’d died, end of problem, or that it’d cured itself, end of problem. 

That certainly was the attitude among old doctors; they refused to diagnose MS because they couldn’t cure it. So there was a lot of agro up until about the eighties and in fact it wasn’t until we got back here that our local GP at the time said, ‘I think you’ve got MS, go and see this neurologist’ and even then we went down to the hospital in [place name], to the clinic, and he came out and he said to me ‘Do you know what it is?’ and I said, ‘Well, I suspect that it is MS,’ ‘Shall I tell her?’ I said ‘Of course you’ll tell her, man,’ I said. ‘She’s been told she’s a weirdo for years.’ But that was, again, the attitude: ‘Shall we tell them?’
 

Louise’s son was told his diagnosis over the phone in the United States.

Louise’s son was told his diagnosis over the phone in the United States.

Age at interview: 61
Sex: Female
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Anyway he went to the doctor and because he had to take out, or rather we had to take out loads of insurance, health insurance for him before he went, the doctor did some very thorough examinations and sent him for a scan. The results didn’t come back for a long time and just before he was about to leave before Christmas he said, ‘I’ve been ringing the doctor up to find out what’s happened to the results of the scan and she said she’d ring me back’. And then he said ‘She’s finally rang me back and she says, ‘Oh it’s MS but don’t worry it’s not very severe and you’ll be able to have a daily injection. As soon as you get back to the UK go and get the diagnosis confirmed’.

When my son came back he made an appointment with his GP who referred him to the hospital. He had a, I mean it’s quite difficult for me to talk about it because I wasn’t there, you know, all this happened in the place where he studies which is quite a long way away and it’s just what you hear over the phone and what he tells you and that’s one of the problems when you can’t go with someone to the hospital, be there and so on. 

But he had a lumbar puncture and he got the diagnosis back, then he started to have more symptoms. I remember him describing pins and needles at night and not being able to sleep and various other things. But he’s not a person who will really tell you what his symptoms are. He always says, ‘Oh I’m fine, I’m fine.’ If he says, ‘I had a struggle,’ you know that it really was a struggle. So he makes very light of it and still does.

You talked about the beginning stages and I was thinking about what you were saying about the diagnosis, the way the diagnosis was given in America, over the phone saying, ‘You’ve got MS, but don’t worry.

Yes, appalling.

What sort of support do you think health and social care workers ought to be putting in at that beginning stage?

Well, everybody I’ve spoken to remembers how they get the diagnosis or how their loved one got the diagnosis and it seems people have horror stories and, you know, or some, it’s a relief because they’ve had symptoms for a long time and it’s a relief to get a diagnosis but I think the way we got it was just appalling because we were just sort of left in the dark really. 

And, as I say, because my son lives away from us I don’t know what kind of support he got when he got his diagnosis. I think he did get quite a bit of support but we were just sort of left floundering really. It would have been useful to have somebody come round and just talk to us about it, tell us what to expect and tell us what help was available. But, as I say it was, yes, I think my son got some support but I don’t think we did particularly. But then it’s a question of resources, I suppose. But I do know that it’s tremendously variable, the amount of support people get when they’re first diagnosed.

Stella was sitting in the waiting room when her husband was diagnosed, she wishes she had known she could have been in the consultation room with him, because he was so shocked. 

A diagnosis of multiple sclerosis is based on results from a combination of various tests. These include the patient’s medical history, neurological examination, magnetic resonance imaging (MRI) scans, evoked potential tests, and possibly a spinal fluid test (lumbar puncture).
 

Dr Richard Warner a MS Nurse Consultant talks about what happens when somebody with MS goes to see a consultant for the first time.

Dr Richard Warner a MS Nurse Consultant talks about what happens when somebody with MS goes to see a consultant for the first time.

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What happens when somebody goes and sees a consultant? What can they expect when they go for a visit to a consultant for the first time?

There is a set of international criteria, if you like, to help frame a diagnosis of MS and the current one is called, McDonald Criteria. That is freely available on the Internet. If people Google that they will find it. So what the neurologist is trying to do is see whether the person’s history, their experience of what has been happening to them leads them towards meeting that criteria, if you like. And again the vast majority of people with a diagnosis will meet that criteria, clearly some will be on the periphery, so on the edge of that criteria at some point. 

What the neurologist is trying to do primarily is demonstrate what is called dissemination in time and space. So time as in months, days etc. Space as within the central nervous system. So if a person presented with a history of visual disturbance and that sounded very much like optic neuritis. Sometimes people are surprised that the neurologist will then start to examine their legs. So what they are trying to do is demonstrate dissemination into space within the nervous system. So if the person has already told the neurologist that they have a problem with their eyes so they accept that and they are looking for neurological evidence of damage to say the spinal cord or the brain. So they are trying to demonstrate dissemination in time and space. 

They do that by listening to the person tell his story, taking a history, examination. So that’s moving limbs, looking into eyes, checking reflexes and then may arrange for further investigations. So that would be things like an MRI scan. So MRI provides a nice image of the structures of the central nervous system and you can see what looks like inflammation on there. They might do what’s called nerve conduction tests. So this is a test to measure the speed of a nerve, speed of the conduction along the nerve. So this might be sensory and the person might have to go and have electrodes placed on their skin. It might be to do with vision again and they’ll look at a chequered board and have little electrodes sitting on their head to measure the speed of conduction on their optic nerve. Also there is something called a lumbar puncture. The lumbar puncture is to try and remove some of the fluid that encases the brain and spinal cord to see whether there are markers of inflammation that have made their way into that fluid. So again MS is an inflammatory condition so when there is active inflammation going on within the body the body produces by-products of that if you like. They make their way into the fluid that circulates around and that will be seen in the lab, they will be able to identify that. The test is called oligoclonal banding.
The people we spoke to did not have technical or professional knowledge of the tests and investigations which doctors use to establish a diagnosis of MS. But on the basis of what they remember being told, some spoke of the lumbar puncture as the definitive test. For some it was ‘obvious’ that the person should have this test, but others were reluctant to have it. However, it is not definitive, and these days many specialists regard MRI as more useful and a less invasive test. Even though it too is not definitive, “MRI scans confirm a diagnosis in over 90 per cent of people with MS” (see MS Society website accessed March 2020).
 

Jeff’s wife preferred not to have a lumbar puncture; the consultant seemed pretty sure that her symptoms meant she had MS.

Jeff’s wife preferred not to have a lumbar puncture; the consultant seemed pretty sure that her symptoms meant she had MS.

Age at interview: 62
Sex: Male
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And on his way out he just beckoned to me and called, and wanted to talk to me outside the door, and said, “I want you to be prepared for this. There’s a large possibility it might be MS.” And he said he thought the experts at the local eye hospital would give us some more information on this. And in fact that’s what they did. It seemed to be that it was a case of optical neuritis, a classic symptom of MS. In those days, all these odd symptoms, you, you, you, you couldn’t really put one cause to it, and they were sort of ticking off all the checks and MS was the one thing that was left at the end. And I believe the only other thing you could do at that time was a lumbar puncture. Which, there had been horrendous tales about at that time, being quite painful and my wife didn’t want that. But the eye specialist seemed to be pretty conclusive that it was optical neuritis and a classic sign of MS.
 

Ann’s daughter doesn’t want to have a lumbar puncture ‘for the sake of’ getting a diagnosis which would make her eligible for treatment. At the moment the doctors feel they can manage her condition without medication.

Ann’s daughter doesn’t want to have a lumbar puncture ‘for the sake of’ getting a diagnosis which would make her eligible for treatment. At the moment the doctors feel they can manage her condition without medication.

Age at interview: 55
Sex: Female
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So we went and had the scan, waited for that and then in October we went back to see the neurologist, the consultant and he said that there was signs of damage both in her eye and the optic nerve and in her spine. And in all likelihood that she’d had an MS type attack. But because she’d not had another one since then they didn’t want to do any interventions and they didn’t want to do this, they didn’t want to do the other on that and they mentioned that the first visit with the consultant when he told us about the diagnosis that the only definitive test was a lumbar puncture and that just freaked my daughter out even more. She was very young and not a very nice procedure.

She’s had full body MRI scans, MRI scan in the beginning for her optic neuritis and she has, she had a scan actually about four months ago and the consultant used the language, was well there’s no more because it’s your myelin sheath isn’t it, it’s an attack on your nerves and he said we can see one that was about 10 cm long it’s now gone away so it’s healing up there’ll be scar tissue there. We can see the one still in your eye but they couldn’t see any, anywhere else so and the, he said to her, you know, in all likelihood you have intermittent relapsing MS but, he said, and that’s what we see from your scans but the definitive test is having a lumbar puncture and he said if you have another episode that’s very serious, he said it might control itself but, he said, to get any of the new drugs that are being trialled you have to have a definitive diagnosis. 

So then, we then said well what will these drugs do because she’s not having these horrendous episodes, she’s having very, I hate to say it but more minor ones compared to what other people have so would you give her any drugs anyway and the consultant said, “No we wouldn’t” and he said, “and we wouldn’t even like to give her drugs for chronic fatigue unless she wasn’t managing it.” He said, “What our aim is with her is to keep her here with no medical interventions as long as we can” and he said to her, when we saw him last about two or three months, in terms of one to ten he said, “You’re a ten, you know, and that’s how we want to keep you.” 

So we haven’t, we haven’t sort a definitive definition, I think we’re all quite clear that that’s what it is and that she could have a relapse at any time but a lumbar puncture’s not going to do anything for us. If I felt that there was some drugs out there or some treatment that she could benefit from then I would be back and we would think about it but she’s vehemently against having a lumbar puncture for the sake of it. So that’s, I think that’s where we are with that.

Many people recognised that it is not easy to diagnose MS and improvements over recent years in the speed and accuracy of diagnosis were acknowledged. Some people emphasised the need for more information and support at the time of diagnosis.
 

Stella feels that the person’s ability to receive the diagnosis should be assessed more thoroughly.

Stella feels that the person’s ability to receive the diagnosis should be assessed more thoroughly.

Age at interview: 45
Sex: Female
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And so the second time he saw the consultant, I was actually present. And I didn’t… I didn’t find the consultant very helpful. He was very friendly, and he tried to accommodate also an appointment and it turned out that [partner's name] had never been in contact with the nurse, the MS nurse, because after the first... after having seen the consultant for the first time, he just it was a massive scare really, because you get told there’s no hope and you can expect to get worse and just be prepared for it. And you can’t tell…you can’t tell that to anybody, because I don’t really believe that, you know, there’s always hope, whatever you have, there’s always hope. And you can’t tell that to anybody. 

And so he was like in a terrible state. I think when he had this interview with the consultant, he didn’t…he was just like frozen. I think I was away that weekend, even, and I came back and he was like, like frozen, really physically frozen, and wasn’t even able to talk about it anymore. 

And I think diagnosis still gets thrust upon people without making sure that they can cope. And I think my partner’s not particularly good at asking for help, also, and so just taking into account that people may not be able to express what they need and just taking into account that a diagnosis like that, you know, you may need counselling or somebody to talk to afterwards.
 

Betty is angry that she and her partner weren’t given more information.

Betty is angry that she and her partner weren’t given more information.

Age at interview: 58
Sex: Female
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Basically, just over five years ago my partner had backache but because of his occupation that was an occupational hazard. Usually a couple of weeks off work, fine. Went to a local GP, pain killers, the usual, didn’t happen, still backache. So, after about three, four months the local GP decided that he ought to be referred to a local hospital and then we had, I suppose, nine months of going backwards and forwards to the local hospital goodness knows how many scans and MRIs and things we’d never even heard of. But all this time, you know, I mean we were still hanging in there but unfortunately he couldn’t work because of the job he actually had.

We were called in after the last time and told there’s good news and there’s bad news. The bad news is that you’ve got something called MS but the good news is you’re got primary progressive and if you’re going to have anything that’s the best one to have. And then five minutes later we were in the car park and we thought, ‘What?’ [laughter]. Anyway, oh, before we left we were also told that an MS nurse would be in touch and, you know, all the rest. We came home here and we didn’t know what the hell to do. We didn’t know who to contact or anything. So we tried to get on with our life.
 

Ray thinks people need to be prepared for the possibility of having MS diagnosed.

Ray thinks people need to be prepared for the possibility of having MS diagnosed.

Age at interview: 17
Sex: Female
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Ray: When the wife was diagnosed she was with her mum at the hospital and I come home from work and she, and her dad, chat with him, she said, she’s got MS. I said, “Oh right. What happens now?” Nothing. There was nothing. Absolutely nothing. It’s, you’re diagnosed with it, go home and get on with it. Which, I’m talking obviously with hindsight and it wasn’t, shall we say, a real big deal to us at the time until we started to have a look at the illness, try to understand the illness, so that prepare ourselves for good, bad or indifferent. So we did, over a few years, quite a lot research and half knew what to expect, how things might progress. 

But I think since, since, since the wife has been diagnosed I think doctors and neurologists are more up front with the situation because I, as I said before, the wife was nearly two years. Some people are four years before they’ve actually had their diagnosis and they think they’re going mad. You know, they think it’s all in the mind. It’s something else, it’s something they’re eating. So I think that, you, the diagnosis needs to be quick so that the people can take charge of their life again. And I think that slowly, certainly in our county, I think that that is happening, that the doctors and the nurses are a bit more up front. 
 


Last reviewed July 2018.
Last updated March 2020.

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