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Emma

Age at interview: 37
Brief Outline: Emma’s husband, age 29, was diagnosed with an aggressive form of relapsing-remitting MS in 2011. Emma’s scientific background helps her to understand the illness and the available treatments. She is eager to find out more about relevant clinical trials.
Background: Emma, age 37, works as a food technologist. She describes herself as white European, Spanish. She is married, with no children.

More about me...

Emma’s husband, aged 29, was diagnosed with an aggressive form of relapsing- remitting MS in Jan 2011 after first experiencing symptoms in October 2010. At first they thought his headache and vomiting was caused by food poisoning but even when those symptoms went away he felt strange. He was referred back to his GP from one accident and emergency department but admitted for investigations a couple of days later to the hospital near their home. 

From the moment that MS was suspected Emma researched the illness on the internet. She has a degree in molecular biology and understands scientific terminology. She was determined to find out as much as she could about the illness, and the treatments which were offered, in order to help her husband make decisions about which treatment to take. They found that the potential side effects of Tysabri (an immunosuppressant) were serious and he decided to have interferon-beta1 treatment instead.

They were both devastated by the diagnosis, partly because it meant the end of her husband’s dream to become a pilot. They had invested a lot of money in his training, which he now had to give up. He still works in a part-time job and currently does not have symptoms. He has joined a gym and Emma ensures that he eats healthy food, paying particular attention to vitamin D and to Omega 3-6-9 fatty acids. She is determined that he will stay healthy enough to work, for his own benefit, as long as possible. Emma is the main income earner and is also paying special attention to her own health, having recently given up smoking. 

Emma feels that, with one or two exceptions, they have received very good treatment in the NHS. A doctor suspected the probable diagnosis quickly from the story of her husband’s symptoms and they have received ongoing support from an MS nurse. Emma is very critical, though, of a GP who told her husband to go to ‘Specsavers’, when he complained of double vision, even though he had been diagnosed with MS. (They changed GP). She also feels that not enough information is available about recruitment to clinical trials.

Emma appreciates the knowledge and skill of the medical staff at the hospital but feels that she would like more frequent contact with the consultant. And she felt that for her husband to be told straight after being diagnosed that he might not be eligible for treatment in the UK because he is originally from Brazil was not very sympathetic at a human level. Emma emphasises that they have both worked all the time they have been resident in the UK and have received no financial benefits at all. She also feels that, although she is an emotionally robust person, she does have a need for psychological support which is not really beinng met. 
 

Emma’s degree in molecular biology helped her understand all she was reading about MS. She passed on the information to her husband, to help him make decisions.

Emma’s degree in molecular biology helped her understand all she was reading about MS. She passed on the information to her husband, to help him make decisions.

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We went through a period of ‘What do we do?’ I tend to read a lot. I got a degree in molecular biology, in Spain, so it’s not, I’m not a specialist because I haven’t followed that career but I have got the background, for me it’s not easy but I’m quite familiar with scientific information with especially all the funny words, ‘immuno-suppressants ‘ those are quite normal for me. I was, doing for six years basically. So I tend, basically, at the time I was reading anything, everything. And it, I mean, it was, I don’t know how my boss didn’t kick me out to be honest because it was quite obvious that my performance wasn’t as usual [laughs]. But it’s just something that you cannot stop. I personally cannot stop, for me, I have the scientific mind kind of thing and I want to know, I want to know, and I find a word that I don’t know what it is and that links you to more information and, and that links you to more. I never stop. I was saying, I’m doing a thesis actually and a thesis with this and so I was reading a lot My husband is not like me in any way, he’s not very, he’s more into speed and planes and all that, so basically I was telling him but ultimately I am the steward ? It was him that has to take the decision because I’m, because it’s his body basically. So for me I give you all the information, I read for you because you, I know that you don’t want to read, I read for you, I tell you everything and then you have to make the decision.
 

Emma’s husband chose to use interferon. Emma feels lucky that he has so few symptoms after an aggressive start to his MS.

Emma’s husband chose to use interferon. Emma feels lucky that he has so few symptoms after an aggressive start to his MS.

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So from that moment it was like right, we, we know the hospital now, we know the consultant now, we need to a decision on the, on the drugs you want to take. My husband was as I say, my husband was because, by the way the other hospital did not explain to us why, my main concern, which was why there is so many lesions but there’s no symptoms. One of the things of MS is that, it’s unpredictable and that is one of the things that’s happened to my husband at the moment, is that it’s unpredictable and we’re very lucky that’s he’s fine.

So we again we discussed with my husband that what are the, the options and that was pretty quickly to be honest and in the end my husband decided to take one of the interferons because of the side effect of the Tysabri and he didn’t want to take the risk of that. It was purely, the Tysabri is one monthly injection they have to go to the hospital but my husband wasn’t care about that, it was only about the side effect that he’s scared although we knew that the possibilities were very low he didn’t want to take the risk

So from May, beginning of May this year, he has been taking the interferon three times a week injections. And so far so good. At the beginning occasionally he has like a cold, flu symptoms, really, in the night so he get very cold and he get a little bit of spasm here and there. But, I mean, generally, you know, if I have to go with that all my life, yeh, bring it on it has been, it’s been good so far. We don’t know how it’s going to be but so far I feel very lucky, to be honest. 

On top of that because I was reading so much we, I, there has been recent investigations in Vitamin D, omega 3 and 6 and 9 so that was one of the first thing, and I’m a food technologist anyway so for me food is important and we have been looking not, not so much about what he eats because I think everything of, a little bit of everything is, absolutely fine but we are having, he’s having Vitamin D and omega 369s blue fish, two times a week, that is a religion nuts, anything that has omega 3 really in the house and also he, went straight away into the gym as well after the end of the year period kind of thing from last year, kind of thing he, he joined gym and he does regularly exercise. So we try to work on that as well. 
 

Emma thinks that non-scientific treatments are not valid, though she understands why people try them hoping they might work.

Emma thinks that non-scientific treatments are not valid, though she understands why people try them hoping they might work.

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Some of the treatments that are written about on the web can be a bit controversial. Have you come across any controversial treatments in your reading?

Controversial, in terms of?

Whether they’re supported by enough research?

I have come across, and I don’t believe in them straight away I understand, for instance, stem cells there is a lot of stem cell... companies, so they call, that they inject stem cell into the cord, into the spinal cord and, and supposedly they do benefit people. Now, I can understand that, I will do anything for my husband so I can understand it from that point of view. From the scientific point of view and, that is the thing, now my background is scientific, I don’t have, I don’t do any credit to that people. 

Would I try it? Maybe, it, if things goes very bad I try anything but that is because I don’t, I, for some people they say that it has worked. Whether that is true or not I don’t’ know. But it’s like you try anything, why not, just try it. It might get better. From the scientific point of view, for me anything that hasn’t been hasn’t been proved through scientific exercises it is not valid. So stem cells, goat milk no, I don’t believe in them. No, I can’t. However, I do think that all this research takes very, there is a lot of bureaucracy involved. So, Fingolimod which is the first pill that has come out it, it was approved by the European Medical Pharmaceutical Agency in January. If we’re lucky in the UK we’re going to get it by December this year. In Spain they’re still waiting for, to establish the process of approval in each country. So there is a lot of things that can be done on that regard. 

But whether, would I support controversial treatments? I just think it’s rubbish. And I hate the people that can make money out of it. 
 

Emma says she has always been emotionally strong. When her husband was going through tests she pretended to him that she thought everything would be ok, and only cried when she was alone or talking to her mother and sister.

Emma says she has always been emotionally strong. When her husband was going through tests she pretended to him that she thought everything would be ok, and only cried when she was alone or talking to her mother and sister.

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I didn’t cry at all because all, in my head the only thing, well I was crying in the bath, I was crying at work, I was crying if somebody came and say blah, blah, blah but the moment that I went into the hospital, I went to the toilet, I washed my hands and sorry, my face and I say, “No, I can’t cry”. So I didn’t actually make it very serious in front of my husband, it was just, you have to be strong, you can’t cry, somebody has to be strong So I didn’t cry, so I was and then my husband’s mother, mother came as well and, you know, we were pretending that, I was pretending personally everything was fine, blah, blah, blah yes there’s a problem but, you know, they are exaggerating, blah, blah, blah. But those two words were in my mind all the time

So it was kind of eight, or, or nine when I went, when I say, you know, “I’ll see you tomorrow, I leave you here now, I’ll see you tomorrow”. And I remember coming here con, contact the first person I called was my mum in Spain. And I couldn’t, I couldn’t talk. I just was crying and my mum, you know shouting back. “What happened, what happened? What happened?” And I couldn’t say a word. I couldn’t speak. Which is amazing because I always been the kind of girl, very strong that never cries. My sister was the one that was crying all the time and I got the blame, but I never cried. So I just couldn’t talk. 

And I told her how I couldn’t, I’ll call you in 10 minutes I can’t talk now. And then my sister called me how, or my sister, or, no, I kind of tried to calm down. I, ten minutes I called back to my mum and I tell her what it was. And I couldn’t stop crying basically. And then my, I called my sister and again very bad and my sister told me, “Do you know what it is?” And I say, “Yes”, I’m reading because as I was talking, as well, the first thing I went was Internet, in MS Society, I just typed it, ‘Multiple Sclerosis.’ and I came up with the MS Society, what is this, what is this, what this is? I started my research. This is the last four, four or five months. And that was it really. 
 

Emma changed GP when her husband was told to ‘go to Specsavers’ with his visual problems. The new GP referred him immediately to a neuro-ophthalmologist.

Emma changed GP when her husband was told to ‘go to Specsavers’ with his visual problems. The new GP referred him immediately to a neuro-ophthalmologist.

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Afterwards then, we went to the GP to explain and because he has to give the note, the out of work period, so eventually she give him a couple of she wanted to give him a month, because he was kind of OK-ish, we, we told her no, we take two weeks and if we need more we come back. 

But in those two weeks they started more flare ups. So in those two weeks originally it was started to feel like he lose the balance for kind of two weeks. He described it as being drunk. Then I, in the following two weeks he started to don’t see properly so there were a few problems with the visual stuff. At that point we went to the GP again, and that one, one of the more distressing things the, the GP, my husband went on his own and the GP said you know, “Why are you coming here for that? You should go to Specsavers”. Which is amazing. I mean, you know, we just, it was, it was like, “What are you talking about?” The next day we change GP straight away. I just, I found that horrible, knowing what he has. And even if you’re not an expert that is one of the first things you need to be aware, so, come on. 

So we changed GP, at that point, we went to another GP. Which one friend of ours, of ours used to go to and he said he was pretty ‘normal’. We went there, we told what happened. Immediately he sent it to the neuro-ophthalmologist.
 

Emma doesn’t really feel entitled to psychological support from the professionals looking after her husband, but she thinks it’s important for her to be as well as possible so that she can support him.

Emma doesn’t really feel entitled to psychological support from the professionals looking after her husband, but she thinks it’s important for her to be as well as possible so that she can support him.

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But, I don’t know, any kind of psychological support that was maybe the only thing that I might like. For me and for him. He was, he wasn’t good but I was trying to support him. But nobody was trying to support me and, and I remember at the beginning, the, the first thought every morning, especially at the beginning and still now when I leave my house, is how will he be when I come back home? Will it be a good day? Will it be a bad, bad day? You know, because you never know. So, you find, you, I leave you in bed and you’re very good, thank God, how’s he going to be when I come back? So that, that is why I thought that maybe that was missing, someone asking me, ‘Do you need something, darling?’ [Laughs].

Could that be any of the people who, who, who’ve you seen? The consultant, the GP, the MS nurse?

No, I don’t expect the consultant to worry too much about me. But the GP or the MS, the MS nurse maybe. But I never thought actually to tell, to tell the MS nurse, “Can I have an appointment with you because I don’t feel very well?” But again, the MS nurse is for the MS people and I know I’m MS people, my husband is, my husband has MS, but I haven’t do I have to, between brackets, ‘waste’ the time of this professional, that is meant to look after the people that actually need her? You know what I mean? I mean, her time has to be dedicated to the people that really need it. Me, I’m a secondary actor in this, in this process. Although I think it’s crucial for me to be as, as well as possible in order for my husband to be as well as possible.
 

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.

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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.
 

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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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.’
 

Emma researched MS extensively on the internet. She regularly visits the websites of MS charities.

Emma researched MS extensively on the internet. She regularly visits the websites of MS charities.

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The first website that I went to, went straight away was MS Society. But to be, as I say, my problem was that I was looking to everything, anything. So the first point of reference was MS you start reading about first symptoms, what could it be? There is a section, it’s divided in sections so you read what it is, the symptoms, why it happens, I also checked into the MS Trust I went to the MS research page. 

But then I, I, became obsessed really and I, it, it was, oh, well research for me was kind of the, my, my first point of view in anywhere I found drugs, it was straight away another one. OK we have a problem we have to find a solution, how can we find a solution, drugs. So what drugs are available. As I say before I was looking into hospitals the [name] hospital, [name] sorry. [Name] hospital. University, when I have, for instance the name of my consultant I actually researched on the Internet to see what, what his curriculum was. So that I can do something! Dr [name] exactly the same. And then previous researches, or, or, any research there, you know, it was just Google ‘MS’ in Internet and looking for, I have researched papers. I have, anything you can imagine. 

For, for me it was something that I did, some, something that I found at the beginning, kind of encouraging was in the MS Society there is a blog or, or, yeah blog where the people have put their experiences and, and ask questions and at the beginning I find that interesting. After a while I’m not quite sure if that was, but at least it was good to know that there were people going through the same kind of thing. And that is why I know that my husband is very lucky at the minute because there are some histories there, my goodness me So it was, it was, about, you know, finding what other things, I was thinking in the future as well. 

So my husband is now not bad, so where can I find a therapist, occupational therapist in the future. And I found that in the NHS website anything. For me, it was anything. I just wanted to know everything. So I can tell you a reference website, for instance, now, the other thing, you know, I have realised that, I calmed down or cannot carry on, one thing that I normally use almost every day or every two days or every three days is the MS Society news website. So, they give you news and another, another website I normally use is the MS Trust, where I found your research those, at the moment are the, are the, ones I normally use.
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