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.
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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.
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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.
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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.
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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.
Sex: Female
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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.
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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.
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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.
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.
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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.
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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.
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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.
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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.
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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.
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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.
Sex: Male
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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.
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.
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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.
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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.
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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.
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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.
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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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