Dr Stone’s talk, 19 November 2014, Southern General Hospital, Glasgow

Janice Ok that’s us live on Livestream, hopefully everyone can see us ok. My name is Janice and I’d just like to welcome everyone on behalf of FND Hope and I’d like to thank Dr Murray and Dr Stone for their time today. I’ll just pass you over to them.

Dr Murray I’d like to thank you all for coming today, my name is Rosanne Murray and just to introduce myself, I’m a neurologist at the Southern General here in Glasgow and have an interest in functional symptoms. Really my interest was stimulated back when I started neurology many years ago noticing the disability that patients live with, the fact that the scans were all normal and sometimes surprising them to be, that was a negative and that people remained very disabled and there was no service to deal with that which just didn’t seem right. When I was a locum over in Edinburgh working with Dr Stone and finding that for once actually there is a way to deal with this problem and more specialised means of treating the problem with talented people, like our physiotherapist Melanie, and techniques that aren’t available for patients with this problem in the community and that standard physiotherapy doesn’t work and you do need a slightly different approach to things. That’s really how I got interested in it, noticing there wasn’t a treatment service and that was really wrong and there should be something better to provide rehabilitation and better quality of life for people with this condition even although the scans are all normal and we don’t have the right test to show up the abnormality at present time.

So thank you very much to Dr Stone for coming across to do this meeting. I’d be happy to give you more information about our service here in Glasgow, and I would like to say that I’m at the start of my career here in Glasgow. There are a wide variety of neurologists here who have dealt with this problem in different manners and there hasn’t been a sort of coherent service, actually there has been a very good service for non-epileptic attacks but not for functional weakness or tremor and that’s why I’m here in Glasgow to help try sort out. It’s been useful to have feedback from patients who go through that service, like Denise here, to help us build on what we are doing right as well as fix what’s not right with the service because it’s certainly true that we don’t have a perfect service and in my experience, my relatively short experience as a consultant, time and resources to change the service are the biggest stumbling blocks even though you have a will to do it, things don’t happen necessarily quickly but feedback is very useful and very important.

Dr Stone Hi everyone I’m Jon Stone. This is a really exciting event for me, this is the fourth event I’ve been with groups of patients so it’s really quite a new experience for me and a new experience for patients as well. Functional Disorders have been such a hidden problem for so long and so stigmatised and I can’t think if there’s been such groupings of patients with these problems, as far as I’m aware of, in the history of medicine, so I’ve got a lot to learn from you here today and from FND Hope and Bridget and I’m really excited at the possibility of working with patient groups in this area.

I think some of you may have been at the event I did at the Fringe in August, can I see how many people were at that event? A few, ok that’s helpful for me. So for those of you who weren’t there, we were in a tent with a lady called Susan Morrison who’s a comedienne and she was running the event, which really made my life a lot easier as she got everyone all worked up and it was a proper show, so I’m sorry I can’t replicate that today. The other really good thing that she did was that she moved things along and made sure we covered all the important things so I really want to make sure that we do that today. I think we could be here for a very long time, I know we are scheduled to stop at 6pm but I’m happy to go on a bit longer, but if any people need to go at 6pm, that’s fine too. I don’t want to spend the whole time talking, I’m going to talk for a little bit and then really I want to have questions and answers as I thought that would be the best thing.

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Maybe I can say just a few things about functional disorders in general, for those people who weren’t at that talk, and I’m assuming there are people here with functional disorders, people who are carers, and I know you will all be at different stages as well, some people might feel they will have a reasonable understanding of that and others may have been told they have that but are not sure if that’s really the right diagnosis, or not seen a neurologist or been through treatment or not been through treatment, etc.

My interest in this area, similar to Ros here, was that I was a neurology registrar in the late 90’s in Newcastle, and saw a lot of patients with functional disorders not getting any treatment at all, and I thought what’s going on here, why are we not interested in treating these people, and it was because there was a culture in neurology at that time of unless you have a disease that you could see on a scan, then this isn’t what we do, and that is what stimulated my interest. As time has gone on I’ve become more interested and have been doing research in this area for about 15 years with colleagues in Edinburgh, and now colleagues across the UK, so there is a network of people and interested researchers.

For those of you not aware, I was going to tell you a little about what it is and how common it is, when we are talking about Functional Neurological Disorders, we are talking about neurological symptoms of weakness, tremor, seizures, sometimes visual symptoms and very often other symptoms such as fatigue and pain, and memory problems go along with that. They are genuine symptoms, absolutely real and not imagined, but they don’t relate to a brain disease, they are not due to brain damage, instead they are due to the way in which the nervous system is functioning and that’s why we call them functional disorders. So in very simple terms it is a bit like a software on a computer more than a hardware, and that’s why you can’t see it on a scan as if you took a computer with a software problem and you opened up the back of the box you don’t see the problem, the bits of the computer all look normal but the computer is still not working properly.

They are very common, people with functional movement disorders, including functional weakness and functional disability is at least as common as Multiple Sclerosis, probably a lot more common. I think the estimates are probably about twice as common as MS. So there’s a strangeness here that we hear about MS and we hear about Motor Neuron Disease and other disabling conditions but we don’t hear about functional disorders, they are very much in the shadows, there’s a lot of stigma, there’s a lot of people not sure of what to make of them, but we know from research that they are very common and they are very disabling and actually just as disabling as some of those conditions I’ve just mentioned.

I wanted to share with you a little bit with you about diagnosis, and how we make a diagnosis of a functional disorder. I think this is a big mystery to many patients, I don’t think neurologists are always that good at sharing that information with patients. Sometimes patients go to see the doctor with a weak arm or a weak leg and the doctor says well the tests are normal, you’ve got a functional disorder, and I think personally that is not satisfactory for the patient or the doctor actually, as it’s not really how you make that diagnosis. Most neurologists do make the correct diagnosis in the right way, they just don’t share it properly with the patient.

Denise, would you mind coming up just to show some of these things as we need a patient. I’m going to show you a couple of physical signs and things that we use to make the diagnosis. If you just go on a story, the story of someone with FND is really often very similar, even identical to someone with stroke, or MS, they might develop symptoms suddenly or they might develop them slowly, but there are clues in the story, there are things that happen in FND, like a symptom called disassociation, that we can talk about later if there’s time, there are clues but really we make the diagnosis based on physical signs.

So Denise, you’ve got a tremor again and you’ve mentioned this to me, but it comes and goes. Are you feeling alright to do this?

Denise Yes

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Dr Stone Well thank you very much for coming and being web -streamed. You’ve got a tremor which comes and goes which in itself is very typical of a functional tremor. Tremors for conditions like Parkinson’s do vary but they don’t come and go quite as dramatically as they do with functional tremor. So if you put your arms in the air for me and copy the movement I’m making with your good hand. So copy the movement and I want you to do it at exactly the same time as I’m doing. Great, now I don’t know if you can see Denise, or maybe the audience can see, that when you copy my movement, now I’m going to speed up a bit here, and now I’m going to slow it down, so I don’t know if you can see and the audience can see that when we do that, what’s very interesting is that the tremor changes when Denise is copying the movement, the actual rhythm in the arm changed, it actually stopped briefly and then it took on the same rhythm as she was making with the other hand, so that’s called the entrainment test. We know from people who have studied this test and tested it across different disorders is that it really is very specific for functional tremor. So if you’ve got a positive entrainment test, you’ve got a functional tremor and that’s regardless of what any tests show, some people have a functional tremor and may have something else.

So will we have a look at doing the other test, it’s very good of you. This is a test called Hoover’s sign and like the other test it’s a positive test for functional limb weakness. If you can push down with this leg for me as hard as you can, it’s shaking a bit so I’ll come round this side, is it your right or left leg that tends to be weakest?

Denise The left side

Dr Stone So if I try and get you to keep your heel flat on the footplate, push down as hard as you can, now I can lift that up with one hand, so there is some strength there but I’m able to lift the heel off the footplate. That in itself is actually quite unusual from most other types of neurological disorders, normally if you’re in a wheelchair for MS or stroke for example, you’ve normally got good strength in that movement as it’s a buttock movement, which is not normally weak, so that in itself is positive evidence of functional limb weakness.

So have a go if you can at lifting up this knee, hold it just there and try to stop me from pressing down, so now when you’re really focusing on the right leg, I can’t now lift up the left leg. So when Denise is focusing on the right leg, the power in the left leg has improved. If we go back to the left leg, can you just try and push down, it’s a bit weaker again, so actually it’s not demonstrating it but fortunately you’re now a bit better so that’s great.

I particularly wanted to share this with you as it really makes me think about what we’re dealing with here, so the situation is that when people have functional limb weakness and they are really trying to move their leg, actually the more they try the worse it gets. It looks to people sometimes that you’re not trying because the more you are focusing on it the worse it gets, but it’s not that when in fact the more the patient tries, the worse it gets. But when you’re thinking hard about the other leg, what happens is an automatic movement kicks in and power comes back to normal just transiently when you’re focusing on the other leg. Patients find that strange and weird, but I’m sharing it with you as I personally find it’s one of the most useful things I share with patients for them to understand that this is not a dustbin diagnosis we just make because the tests are normal, it’s a diagnosis we make because someone has very specific features, they have a pattern of weakness, a pattern of tremor that you don’t have in any other disorder.

Perhaps I can ask everyone, how many people were aware of those sorts of signs? Four? You’ve seen those before, so some people have. I think some people haven’t, I think this needs to be shown carefully to people as you because you could get the idea that the doctor is just tricking you, or just saying look there you go it stopped when you do that so there can’t be anything wrong with you. It’s not that at all, this is a disorder of function of the nervous system, not structure and this happens to be how you can tell it’s a disorder of function. There are lots of other signs, but I won’t bore you with all of them, but there are lots of other features that we look for to make a diagnosis.

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Once you understand that it’s a positive diagnosis, it’s not just a diagnosis they are making because the tests are normal, a lot of things are different. So if you for example have some sort of abnormality on the scan or some sort of abnormal blood test well that might be relevant but if you have a positive entrainment sign then you’ve got a functional tremor even if you’ve got those abnormalities. I think for many patients it’s really confusing as they are told about changes on a back scan or minor changes on a brain scan but don’t worry about it, but for the patient maybe that is relevant, they think maybe that is the cause of my problem. When you can really understand your own physical signs and see how they can change it’s different, you can see that yes there may be some doubts about tests but actually the basic problem is a functional disorder.

I’m aware I’m talking and talking here so let me just make sure I’ve covered other things. Perhaps we can talk a bit more about questions in terms of how and why these things develop as that’s important and we can talk some more about treatment. I think this may be a good time to talk some more with you Denise if you can tell us a bit about your story.

Denise Twenty years ago it started with a sore back. I collapsed about six months after that and went into hospital. I was in a wheelchair for about three years, for about eight years all in I was quite bad and was using walking sticks with no diagnosis whatsoever. With willpower and determination and with help from my family I managed to have a quite normal life. About three years ago, again my back started getting sorer. The back pain had never left me and headaches were permanently there as well but in the background so it wasn’t too much to deal with, I had a great life, got married, honours degree, I did everything as normal as every normal person out there.

Anyway about three years ago my back pain got worse and it was getting sorer and sorer until I was basically dragging my legs behind me. I was using two walking sticks and was only being given more and more painkillers by the doctor so there was not much help there. I was sent to a consultant who didn’t really know anything about FND, I was sent for an MRI and then about four weeks after that I was diagnosed as having FND in a letter and given details of the neurosymptoms website to look at.

I looked at the website and which then gave me the forums for patients who had FND, through that I found that I could go to see Dr Stone at The Fringe in August. So I went along and found out that I could get a lot more help than what I was getting. So with him and with FND Hope and now what Janice has done with FND Scotland, we are getting there to get a lot more help for people out there.

Dr Murray has been a great help to me over the last three weeks. I’m still an inpatient but I will be an outpatient as of this evening, which is fantastic. The care I have received in here has been absolutely brilliant, people who understand what is going on with my body and for everyone else who comes in with it. I won’t lie some of the nurses were a bit stroppy. I cannot lift a jug because of the pain in my back and I had six issues over three weeks when they said you can lift a jug, you’re only here for your legs. I said no I’m not but they half-filled the jug but I still couldn’t lift it so they left me there.

Dr Stone Denise, do you want tell us what the most important bits of your treatment were?

Denise I was just getting on to that part sorry, the best parts of the treatment is this wonderful lady beside me (Dr Murray), she came to see me a couple of times a week, gave me lots of help, asked me what I wanted, and what I thought would help and we’ve been discussing different treatments which could help. It’s been fantastic, it’s not just do this, do that or whatever, it’s asking me what I want. The other part of it is I had seen the neuro-psychologist and that was really good, she had decided that because I had a lot of plans of my own and I knew a lot about it that I could figure out how to stop my stress in my life which is true and my family who support me also which is how I get by. It’s really good and the biggest part apart from Dr Murray, is Melanie and her team have been fantastic.

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Dr Stone Melanie is your physiotherapist?

Denise Yes. My goodness, what they’ve done for me is this.

Dr Stone So when you came in you really couldn’t walk is that right?

Denise I could not move my legs at all.

Dr Stone That was just three weeks ago?

Denise Yes, three weeks ago. I had basic physio treatment down in another ward and that was only enabling me to walk by moving my feet with me using a Zimmer frame.

Dr Murray And that was after five weeks as an inpatient?

Denise Yes

Dr Murray You weren’t getting your toes off the floor

Denise No and I was still using a Zimmer frame. So I went up to ward 67 (Dr Murray’s ward) and the physio’s there decided ok we’ll see what she can do, which wasn’t very much. What I could do was basically lift my knees slightly off the ground so that my heel could come up and my toes would go underneath so I couldn’t even move them. So then they decided right ok, we’re going to do a little work with you, and I said right I’ll do anything you give me. So I’m going to show you now what I can do.

(Denise stands up and walks a few steps)

Dr Murray Fantastic. This is really a great advertisement, not for me, but for what fantastic neuro-physiotherapy can do in about two and a half weeks.

Denise Absolutely

Dr Murray After being in a wheelchair for two years

Denise Yes

Dr Murray Well done

(Applause)

Dr Stone Melanie I don’t know if you feel able to come into the web stream shot, just tell us a little bit, as I think everyone would be really interested to hear your perspective about what things, what aspects of the physiotherapy you think you feel you made most progress with Denise or other patients.

Melanie I feel I have to be honest, obviously I did work with you a little bit but one of my colleagues in particular was working with you quite a lot, but yes Denise came into us and was mobile for very short distances with a Zimmer frame. Certainly when patients come into the ward and show presentation of a functional weakness, what we find is the best way to help retrain the nervous system is to get people up weight bearing on their feet as early as possible. Now while Denise was doing that with the Zimmer frame, she was also taking a lot of weight, down through the frame, through her arms, so through consultation it was agreed that it was something to be tried, to try take a few steps with Kathleen’s hands. We don’t expect patients to take steps without some support but what we find if we give our hands or finger tips support, to encourage and see where we can go. But Denise obviously has put in a lot of hard work, has been very much involved with joint goal setting, deciding what do you feel you can achieve today and we begin to work towards that and you manage that. But I think we just started to see the improvements and then all of a sudden it just really took off, didn’t it?

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Denise Absolutely. One if the days I was having a bad day so it went backwards for a day, but I had the weekend. It was a bad day on the Friday, this was after the second week of walking with the help I went back and then on Monday I said “Let’s go” and so I went to the gym, which I’ve not been able to say in a few years, so that was fantastic.

Melanie I just wanted to say, you said you had a bad day, I think it’s important to remember that you will have bad days, and it’s important to not let that set the scene for the rest of the week or the month and think I’ve had a bad day, how do I then box that and move on from it the next day. Certainly for yourself it’s been hard work, but you’ve been determined and you’ve succeeded. Obviously in Denise’s situation she was in an in-patient setting and had regular, frequent access to physiotherapy, for probably about half an hour treatment sessions at a time. There was greater intensity there of the treatment.

Denise Yes if I was at home getting that treatment it would be a long, long time before I could walk, so being an in-patient certainly helped, not only Dr Murray and the physio’s we all consulted together to what was best for me, which made a massive difference and was great communication, and just because I’m getting out tonight doesn’t mean that stops because I will still see my wonderful Dr Murray and will get good help as I have a lovely neuro-physio near my home as well, so I’ll be able to see her and they have been in contact with her to let her know my progress, as the last time I seen her she gave me an exercise of stand up and bend my knee, so when she sees me next I think she’s going to get a shock.

Dr Stone I think we were talking earlier as I was asking Denise, what do you think, how do you think you’ve made this improvement, I think what you’ve said so clearly it’s really the whole team, isn’t it. I think just physio on its own may not have been so successful, but you’ve had neuro-psychology, you’ve talked around lots of broader issues about what’s going on and the stress you’ve had. You’ve had a much clearer idea of what your diagnosis is, and that I think, in my own experience of talking to patients, and what they tell me is this can make a real difference, in how they can do physiotherapy if they know what the problem is that they are dealing with. I think if you don’t know what it is you feel no-one believes you or you feel not sure if some disease or other problem has been missed. It’s really hard to so some of the things Melanie that you would be asking patients to do.

Melanie I think for me, when we first meet patients for the first time, I think a lot of the initial session would be getting to know the person, you need to gain their trust as potentially we are going to be asking patients to things, like if you’ve not moved your leg for a number of months or even longer and we are asking you to try and stand and take weight through it, then obviously that’s quite frightening so it is about gaining the persons trust, building up that relationship, a lot of time is spent talking, finding out what the symptoms are, what the patients main concern is. Communication is obviously essential and building up that relationship so then we can jointly make these decisions together on how we are going to progress the treatment session forward.

Dr Stone Is now the time to throw things open a bit, to take questions. I’ve got a list of questions from Bridget, asking for things to be covered, before we do that I’d like to have a discussion generally, with questions from the audience. So if you want to ask a question, just pop your hand up.

(Dr Murray will be the roving mic)

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Question One

Audience I had to write it down so that I remember. Basically we’ve heard from Denise there about the input she’s had and how beneficial it’s been. Just for myself and other patients, I was wondering what advice there is for symptoms that come out the blue and they’re not so consistent and you just really want to try to get on with as much as a normal life as possible. Where do we go from there?

Dr Stone That’s a good question. FND covers a massive range of different types of symptoms, ones that are there all the time, and ones that come and go. Are you talking about an attack of symptoms where you lose control of your body or shaking or something like that?

Audience Basically you just don’t know when they are coming. For myself it was two weeks ago and I was back at college then the next thing just out the blue, where do I go from there?

Dr Stone Well one of the commonest types of FND which is not so representative perhaps by FND Hope although lots of people have them is the seizures, we call them dissociative seizures or dissociative attacks, which are sometimes called non-epileptic attacks as they can look at bit like epilepsy but people can also have attacks where they have a lot of abnormal movement but are not unconscious so people know it’s not a seizure, it’s more of a sort of movement disorder. We actually have quite a lot of evidence now about the sort of treatments that help with that. They are an intermittent problem, they tend to be talking treatments where you’re learning techniques and getting advice about what to do when you feel symptoms coming on, and that’s called Cognitive Behavioural Therapy. There was a trial of that done in London, another one in the States, both with very positive results. The English research system, The National Institute for Health and Research recently a group of us applied for a grant from that and there’s a £2million multi-centre randomised trial of cognitive behavioural therapy for dissociative attacks, it’s just started and we’ve started recruiting in Edinburgh for patients who live in south-east Scotland, and that’s going to be about 5 or 6 times bigger than any previous study, to really tell us to give us much better information about what is the best treatment, how effective is it, it’s not going to be effective for everybody, but we think spending, what we need to find out is it beneficial to spend longer, perhaps 12 sessions with someone, really going into this in great depth, is that going to help or not. So we will find out the answer in about 2 or 3 years when the trial is done, but I think until then I think having a real understanding of the attacks, learning particular warning symptoms, that many patients get warning symptoms, but not always, sometimes quite brief ones, learning how to elongate them using techniques to do that.

Audience I did actually have a warning sign and I thought I would ride through it but, so

Dr Stone It’s very difficult to tackle that on your own, there’s some advice about that on the website, the neurosymptoms website, but it’s very difficult to do that on your own I suspect, it’s much better if someone who knows about it can help you and your individual circumstances.

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Question Two

Audience I’d like to ask your opinion on medication. I don’t take medication and basically I haven’t been offered medication but two years now I’ve had symptoms only just recently diagnosed in August and I had come off a powerful painkiller as I was just as sore taking the painkiller as not taking the painkiller and I wanted to see if that had any effect on my brain fog, something I was feeling at the time and came off that medication, and I seen a neurologist but I seen a neurologist that worked under yourself in the hospital and I went to the memory clinic, that was one of my main symptoms was loss of memory and fatigue and for 18 months, after being housebound for 18 months, I started to pick up and thought what I had, whatever it was, was going away. I had a good summer, a lovely holiday and then the symptoms started to show again. I wasn’t sure what it was but came home, went to see this doctor who straight away told me FND. I hadn’t heard of it from any of the neurologists that I had seen, been to psychiatry a few times as well, and I was trying to get this into my head what this FND was. I think he thought that I knew about it and I think he thought I knew all the techniques and stuff. I was given your website and basically that’s why I’m here because being now involved with everyone and seeing how everyone is and realising I have a lot more questions as I don’t have a clue about it but I choose not to ask for medication as I feel even taking the medication doesn’t alleviate the pain.

Dr Stone Just to pick up then on that question about medication, it’s a very good one. I don’t think there is any evidence that there is a tablet that actually helps the symptoms of weakness, movement disorders or seizures, based on those neurological symptoms. I think medication can be helpful in some patients if you have got, for example some patients with FND have really terrible problems with depression or anxiety, not all of them, and that’s one of the misconceptions actually as some doctors think everyone with FND is depressed or anxious, or has some psychological problem, that is not the case, but nonetheless there are some patients who have really quite severe problems with depression or anxiety, and if medication is suitable and going to be useful for that then it should be thought about. I was very interested to hear what you said about the painkillers, pain is really common, particularly when you are talking about weakness or movement disorder, I would say 70-80% of patients have pain and one of the things that can happen is that patients end up on a high dose of dihydrocodeine, tramadol, MST or morphine. My own experience of that is that I rarely meet a patient that I’m convinced that those medications are actually helping them in the long term. I think what often happens is they say it takes the edge off or if they are on it for a while and they reduce it they feel things come back, it doesn’t mean it was helping, it might just mean that the body has got used to the medication. I meet lots of people who I do help gradually reduce and stop those medications, it’s really tough to do that, usually pain gets worse when you do that and stays bad for some time but ultimately I find that patients are usually in just as much pain off it as they were on it but without some of the side effects and you are right, they do cause fatigue and memory or concentration symptoms. So I know how people end up on these things, the patients desperate, the doctors often desperate to help and want to give something to help.

Audience Do you think they psychologically help the patient more than it would be beneficial to their symptoms?

Dr Stone I think if you’re on a high dose of morphine and you’re so spaced out, it takes you away from the pain rather than helping the pain, but I think in my experience morphine, codeine and tramadol should be avoided really as much as possible, but I appreciate many people in this room will be on those things and it doesn’t mean you should suddenly stop them, that would be dangerous, talk to your doctor, etc. But that’s my experience.

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Question Three

Audience The health board area that I’m in I’ve been told there is treatment available but NHS Tayside won’t fund it. Where do you go from there?

Dr Stone I had a message from Bridget, I don’t know if you sent the message to Bridget, was that you? There are now, the situation is changing across Scotland, from 10/15 years ago this problem was totally invisible both in terms of patient groups, and even research was rather minimal and services, so things are building up. Cathy White is a neurologist in Dundee with Dr Stewart and they do have a service but I think none of the services in Scotland would feel they have a complete service. I don’t have a complete service in Edinburgh that I want.

Audience It just seems in Glasgow with Denise getting the physio that is equipped for her special needs, I was basically told you have FND, here’s the website and it was put on the back of a cardboard box with your website address, thrown at me, I wasn’t even diagnosed properly. And basically once physio had heard about it they ceased to help, they didn’t want to help and I know that physio does help.

Dr Stone That’s a very common experience, I know many patients who come and see me say I was told about this website on the back of a cardboard box and they are not very impressed and I have to say well actually that’s my website. But no I think you need to have these things, the website only takes things so far, you need to have these things explained to you personally, you need to see how this might apply to you, because you might think well that’s all very well but is that what I’ve got. Unless someone has gone through it with you explained why it is what you’ve got then it’s not very helpful.

Denise When I seen my physio, when I was sent to my physio, they automatically said I don’t want you to be seen by us, I want you to be seen by a neuro-physio and that’s what they did for me, they referred yet again and I had a longer wait but I got to see a neuro-physio in my area.

Dr Murray I think what we need to say is that Denise was seen by the only neuro-physio in Lanarkshire and again we treated you as an in-patient. I would love to have Melanie treating out-patients but we don’t have that service even in Glasgow at the moment.

Dr Stone We don’t really have it either in Edinburgh, but I do have excellent physios that I work with and if I twist their arm they help me see some patients. So we are currently applying for funding, we have been trying to put pressure on for funding for many years. The other thing to say is our expertise is still building in this area, we are still finding out things about what the best thing to do is. We’ve just written this paper with Melanie, it’s just about to come out which is really going to be the first paper which gives you the nuts and bolts about what physio treatment ought to be. I think for some physio’s it’s very difficult for them to know what they are supposed to do. Neuro-physio is a good place to start, I’ve been to Dundee and I’ve talked to the physio’s and OT’s and they are actually very enthusiastic as a group to do more but we need to, there’s quite a lot of pieces of the jigsaw to put together, and neuro-physio is the place to start. I think there’s no-where in Scotland that I’m aware of that has the out-patient physio funding we would like or ought to have. Probably what I think would be really helpful if each region had a specialist nurse, a specialist physio and also a specialist psychologist as well, as the psychological treatment of FND also requires particular expertise, which is also really helpful as part of the team and we shouldn’t forget about that in conversations about physiotherapy. So what you do, I suggest, is refer on to neuro-physio at Ninewells and see what happens.

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Question Four

Audience My question was a wee bit similar to that last one, I’m from Northern Ireland and my son is 15. He had a similar experience to Denise and he got admitted quite quickly, about six weeks he got admitted and got intense physio and got walking and got out home again. My area that I’m concerned about now is there isn’t any support for teenagers or support as a parent. You know what you’re supposed to do as a teenager but he’s currently out of school and has been out of school since Christmas, but he is walking so his functional symptoms have kind of eased off but he’s a teenager and he’s in the house 24/7, but functioning very good at the moment.

Dr Stone Yes it’s nice to come back to those things that Bridget was raising about parents, or in your case parent. I’ve got two sons and it must be incredibly difficult to see your son go through an illness like that, and I think you’re right that sometimes the care and level of support can drop off quite dramatically once people leave hospital. I think this is really for me, one of the answers to that would be to have these specialist physios and specialist nurses in each region. Now they, even if we had that, that wouldn’t be enough people really to help everybody but I think what would really help would is if their skills and knowledge would then start to filter down to other community teams so for example, West Lothian is a good example of an existing rehabilitation team who weren’t seeing patients with functional disorders, but over time and hopefully partly because I was working with them, they did start working with functional disorders and just regarded it as another condition that they work with, just like MS, stroke or brain injury. I think that the teams are there but they haven’t had FND on their radar, as a problem, as an issue that they need to be trained about or as part of their remit and that’s what we need to change, so I think having local specialists within each discipline, nursing as well that we haven’t mentioned, would really make a big difference. I know there are lots of people out there struggling and not feeling supported, and not knowing where to go.

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Question Five

Audience My neurologist told me that it’s generally believed that the cause of the problem lies somewhere in the subconscious mind, he said that there can be stresses and problems in the mind, when you actually feel fine but it’s something that are manifesting themselves into the physical symptoms, like the non-epileptic type of seizures. Is there any evidence at all if things like hypnotherapy, that sort of thing, can be used to treat it?

Dr Stone Well that’s a very good question, I would say that’s what generally used to be believed I would say, that it was all in the sub-conscious mind, so we have this term ‘conversion disorder’ which Freud, the psychiatrist 100 years ago came up with that idea, that people were converting some sort of stress into symptoms. It’s been a very popular idea, it’s lasted 100 years, I do meet patients where that does seem to have some relevance actually when in treatment, but quite rarely I would say, and I think that it’s not the explanation for most patients with FND, or it’s not as simple as that. I think we have to look at this problem from both psychological aspects but also neurological ones, and we can’t separate the two, it’s all the stuff that’s between your ears, and I don’t take the sort of view, it’s very confusing for people because we have psychology and neurology, and it’s all the same organ really. So this idea that it’s all something that’s deep, buried in your sub-conscious, we shouldn’t get rid of it completely but I think it’s really not been an adequate explanation and it hasn’t helped most people with that idea.

Audience Do you think it’s quite possible with further research that they may find that it actually is something physiological in the brain perhaps?

Dr Stone Well I think we already know that it’s physiological in the brain, because where else could it be? I think it’s more a case of, the sort of signs I’ve shown you tell you that we are dealing with a problem, I don’t think we are going to discover that there is some secret brain damage that they haven’t found, I think that we will hopefully find out more about what is that software problem, how does it work, which of the bits of the brain are not working, and there have been some studies like that where they have used functional imaging and seen changes in the brains of people with FND, that look different to not only to people who haven’t got FND but to also very importantly, they look very different to people pretending, so there is a difference, and I think that sort of research is very interesting. I think we’re a very long way from being able to use that, for that to particularly help treatment, it might help in other ways, but it’s something that I wish that I had done some research like that and we hope to do more. It’s a big topic, so I hope that answers your question.

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Question Six

Audience I had initially thought about the benefits of CBT, cognitive behavioural therapy for non-epileptic attacks, my husband has actually undergone that treatment, and it was the only thing that was on offer, the practitioner only offered it as an anxiety related support aid, if that’s the best way to describe it, very limited

Dr Stone It didn’t really help?

Audience No, not really, they really struggled to understand that it’s not necessarily anxiety, that’s not what we feel that it’s related to.

Dr Stone That’s a very good point, I think if you’re going to be delivering CBT for, I prefer to call them dissociative attacks as non-epileptic attacks is telling you what you don’t have, and I think delivering that requires training and knowledge of dissociative attacks. Many patients, I would say most patients I meet with that, what they are very struck by is how often their attacks don’t happen when they are stressed. They are most likely to happen when they are sitting watching the telly, doing nothing very much. That is because, I think that’s because when you are in that state, you’re not doing anything, you’re not talking or moving about, you’re more likely to go into a trance like state, which is the state that people go into in a dissociative attack. Dissociation is a word that means spaced out, not there, etc, and so when people say they are anxiety attacks or they are related to stress, these patients will say well I wasn’t stressed, and the patient is right. I think some people do have attacks when they are really stressed as well, so there is a mixture in some people, and some people have completely random attacks that don’t fit into any category, and I think it’s more likely a habit that your brains got into and switches off and once it has happened a few times, it can happen without any particular trigger. I think CBT for this can be very successful but it has to be someone who really understands these sorts of things, and knows that because otherwise they are banging on about anxiety all the time, and the patient will think well you don’t really understand what I’m going through. I think patients do feel anxious a lot about their attacks, and when the next one is going to be and whether they are going to fall over or be embarrassed or hurt themselves, or whether they are going to wake up in the morning, so those sorts of things are good to talk about, and do make a difference. I think there is an issue with training, it comes down to training again, I don’t think it would take that much to have better knowledge or training amongst psychologists who probably generally really do want to help and would like to have that training as well so that is underway I would say.

Audience In all the years you’ve been looking at this condition, this may be a pointed question but, have you seen people totally cured?

Dr Stone That’s one of the first questions that Bridget had, so thank you for asking. Yes I have is the answer, but I think it’s unusual, it depends on the problem. So if you just have attacks and that’s your only problem then that’s a much easier thing to conquer than if you’ve got seven or eight different symptoms, like pain and fatigue. I see a lot of, I think recovery is interesting as I see a lot of patients who will come back to clinic and they are still limping a bit and they’ve still got the tremor and I’ll say how are you doing and they’ll say I’m massively better and I’m thinking great, you don’t look that different but they tell me they are feeling a lot better, they are doing a lot more and recovery can mean still having the symptom but being able to do the things you want to do like get back to work, do things with your family, it doesn’t necessarily mean you have to get rid of all the symptoms, so that’s a much more common recovery and that I think that’s worth aiming for.

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Question Seven

Audience I was actually diagnosed with FND three years ago, four years in February, and it all started off with weakness, and then they said I had dropped foot. From then I’ve been in PDR unit, and for months at a time I was in a wheelchair getting splints and all sorts of things. I’m up walking about just now but my main problem just now is I’ve been put on amitriptyline and tramadol and propranolol and diazepam, and I was mostly sleeping then wakening up, sleeping then wakening up, so they decided the propranolol was lowering the blood pressure, so that was affecting my balance and how I was walking so I’m now down to amitriptyline and tramadol for the pain, but my main symptoms just now when I’m speaking to the neurologist at the Southern General is the right side of my head is killing me, absolutely in agony and when I’m wakening up in the morning I can’t open my left eye, the right side of my head is sore, I’m in agony and actually holding the pillow next to my head, I’m taking tramadol, I’m trying to take nurofen and everything under the sun, and my neurologist is telling me the next thing from tramadol is morphine and I’ve got an option to get morphine but I don’t want it. My hands are going into spasms and is the right side of the head affecting the left side of the body and I’m just wondering now is this a seizure, is this the stage that I’m at now, because on the website I got told, you’ve got FND, there’s the website so when I’m looking down and it gives you all these different symptoms, I know everybody is different, but I’m beginning to ask myself is this the stage I’m at, am I going to taking seizures?

Dr Stone So, it’s difficult I can’t obviously comment on your individual symptoms or tell you the answer to that, it requires a proper consultation with your doctor. As a general point, headache is very common, migraine, chronic headache, there is advice about that on the website, it doesn’t involve taking tramadol and morphine, that’s not good for chronic headache. I’m aware when I made the website that may are saying that the doctor is saying oh here’s the website, but before that the doctor would just have said nothing, so I hope that’s better than nothing but I appreciate it’s still not great. I think that some people look at that website and see all the various symptoms and think oh my god am I going to get all of that lot and when I was making it I thought how can I do this in a way that doesn’t terrify people, but it’s quite difficult to do that when you’ve got a group of people are all different, some may have three of them, some have six of them, all different combinations and I think of a way of doing it and I would welcome any suggestions. I know as well that people think a lot about the future and what’s going to happen to me, am I going to get worse? Am I going to be as bad as some of the people whose stories are on this site, or on FND Hope. When I started off I had some quite optimistic stories on the site and a few patients said well those are a bit optimistic and I haven’t got better, this is not reflecting my reality, so I put some other ones on that were a bit more and other patients looked at them and said this is depressing, so I don’t know what the answer is but I think for your particular question I think you need to take that back to your doctor I’m afraid.

Audience Thanks very much

Dr Murray I think I would add in that it’s worth trying other things, alternative therapies and anything that you think might help you, because you know yourself better than anyone else, and I often say that to people.

Audience I can’t open my eye in the morning, its affecting my speech, so I don’t know. I look fine when I’m up and walking about and all the rest of it, but it’s all these wee things that’s happening, and the splints, I’ve been waiting more than four months to get the splits made smaller because my legs are getting thinner and thinner at the bottom and I’m determined not to go back in the chair, so I’m trying to walk, and I feel like all the psychologists and you’re trying to be positive but there’s all these other people that are kind of holding you back and letting you down, like the waiting list for this and the waiting list for that, and I know you are all trying to do your best but it is hard and it’s frustrating and then you’ve to try not to stress yourself out, because then they say oh you’re stressed, you need to here and not up and down, but if we were given the help we would be level.

Dr Stone I do sympathise but I’m just aware of time, as we said we would finish at 6pm, I don’t mind carrying on but if anyone needs to go.

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Question Eight

Audience Has there been any studies into whether or not FND is genetic?

Dr Stone No, not really I would say is the answer to that. I think it’s very likely that all human conditions are partly genetic, migraine, inflammatory bowel disease, asthma, depression, everything, as it turns out that you can blame your parents in some way for that, and I’ll be absolutely shocked if FND is not also the case. It’s certainly worth looking into that, but to do that properly you’d need thousands of samples really. I was talking about this recently and talking about how you would do it and we would need thousands of samples and it’s not a genetic disease it what I’m saying for the web-streaming audience, you don’t need to worry about passing it on to your children, but I think there’s a vulnerability to FND, that is shared with many conditions, so particularly irritable bowel syndrome, chronic pain, chronic fatigue, migraine, which I have, there’s a shared sort of genetic load, for that. So I think we should try and find out but I’m not sure if the answer is going to help really, if we say yes it’s partly genetic.

Question Nine

Audience The lady at the front there said her son was 15 and suffers from it, and I would say most people in this room are mostly late 30’3/40’s, early 50’s. Is there any elderly people, as there’s very few in the room that suffer. The reason I’m asking that Is that when you mentioned the word stress, stress seems to be worse when you’re bringing a family up, or trying to hold down a job, and the pressure to that, what I’m thinking is does the stress go away as you get older, does the symptoms wane?

Dr Stone That’s a very good question, I think there is something in that. When people have looked at stress, we’ve looked at the effects of stress very carefully and we find that people with FND do have, on average, a bit more stress than a normal person so people have put to that, oh stress must be relevant. But the trouble is you meet individual patients who don’t have any stress at all and they get really annoyed at people who say that’s its stress related. When you look at stresses they are the sorts of stresses you have at those points in your life so if you’re at school the stress is exams, fitting in, etc and if you’re in your 20’s its sometimes people who’ve had adverse experience as children, that’s a vulnerable point in your 20’s for that to come out, and the peak age for functional movement disorders and weakness is late 30’s, but that’s the peak and the range goes from about 7 years old and I’ve seen a lady who was 84 with a functional disorder, so yes older people do get it and when you talk to them one of the biggest stresses they have is other medical illness, particularly heart disease, and they’ve often got an illness that is a bit life threatening, so that’s stressful and that brings on FND. It certainly happens in all ages.

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Question Ten

Audience Dr Stone, I’ve got a few questions from some of the members who weren’t able to be here today. The first one is, what is the criteria for a referral back to neurology after an FND diagnosis has been made? The GP has seen the pain worsen and spread but she doesn’t know what to do for the patient.

Dr Stone Well that’s a difficult one as it depends on your GP, GP’s normally refer when they have reached or are just about to reach their limit of their own ability. Some GP’s have a lot of ability in this area and some don’t. So I would say the criteria is when the GP feels they are about to reach the limit of their ability and need help either with the diagnosis or signposting to treatment. It might be that the patient doesn’t need to see a neurologist if they’ve got an established diagnosis, and the patient and doctor are happy with that, it might be better to go straight for treatment but if there’s queries about what the problem is then a neurologist is usually the right person.

Audience The next question is from a member who has now been diagnosed with MS, she’s asking are neurologists tending to brush off symptoms as FND instead of investigating properly. She was diagnosed with FND for a number of years and then received the MS diagnosis.

Dr Stone This is a subject I’ve studied in a lot of depth, we looked at all of this studies and this issue of are doctors just getting it wrong, if people with FND are all going to get MS in the end. And what we discovered was that about 5% of patients end up with the wrong diagnosis, so they were given the diagnosis of FND and it turned out to be wrong. And you might think gosh that’s a lot of people, and it is and you wouldn’t want to be in that situation, and you wouldn’t want to be one of those doctors, but it turns out it happens the other way round just as much, and probably more, because people have been told they’ve got MS or stroke, and it turned out that they never did. And they went through all the stress of FND and all the stress of being told they had brain damage, so misdiagnosis is a fact of life in medicine, we can’t get it right all the time, the more research we do, the more accurate diagnosis will be. I would hope that in the future that doctors and patients won’t feel that they are brushing off someone by making a diagnosis of FND, you don’t brush off someone when making a diagnosis of MS as they are both genuine disorders so it’s probably a bit more about how that patient was communicated to and treated that made them feel like they were being brushed off.

Audience The final question I have is, will all GP’s be trained in FND?

Dr Stone Well GP’s have to train in a lot of different conditions and even though FND is very common, it’s jostling with thousands of other conditions that they need to know about. So I find that GP audiences are very interested in this, they see a lot of patients in other specialties where they’ve got functional disorders, functional bowel disorders are very common, or functional voice disorders. Most GP’s, I find that they know more about functional disorders than most other specialists I meet, they do however get, a lot of doctors will suffer from ‘neuro-phobia’ they really feel a bit worried about neurological diagnosis and so this is an area that they do need a neurologist to help. So I think there is in the sort of medical literature, in the British Medical Journal there are articles about this, and learning modules, and I’ve done that as well, talks, whole rooms full of GP’s who are keen to learn so I think we’ve just got to keep going with that one.

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Question Eleven

Audience I just want to touch on the term functional, one of the things we were up against a couple of years ago when we first got the diagnosis, we went back and spoke to the wife’s psychologist and he said I told you it was all in your head. Because the term functional as a lot of GP’s or practitioners will see it means in your head, it’s a psychological issue not a physiological issue, so this was one of the things that we were up against, from the get go which is why we got dismissed and put to the side-lines so many times, until we eventually pushed and got to see yourself, if anyone else has sort of experienced that mental blockage from GP’s and such.

Dr Stone So this is a difficult problem because I think the issue is really one of stigma, it’s not really about the word, people were talking about functional nervous disorders in the 19 th century so we’re not sort of inventing a new word. For me it just means what the word means, there’s a problem with function, that’s what it means, what the actual word means, the trouble is, as you say, that some people the words functional disorder gets translated into meaning all psychological. What’s really difficult here is this pendulum swinging between that it’s all psychological and the opposite from that saying it’s all neurological, it’s all some sort of brain disease that we haven’t quite figured out yet. And the real problem I have with this is I don’t personally think that there is a difference, psychological and neurological is all to do with brain, but there’s a massive stigma around anything that has the word psycho in it. That’s the trouble.

Audience We were told it was caused by childhood trauma.

Dr Stone Yes these are the sort of things that they have heard anything about it they think it’s a psychological condition caused by childhood trauma. Well that’s just not an accurate representation of the problem. You could say let’s have a whole new different word, to try to describe this problem but people have been doing that as well for 100 years, I personally think it’s better to stick with that term as its used for example by gastroenterologists, for functional gastro disorders and the organisation for that. What you’re encountering there is a lack of, I would say if you’re just equating purely as psychological lack of understanding of the area, a little bit more understanding and education, it would be wrong for that pendulum to swing completely to the other side and say its caused by brain disease it’s all neurological, because if you do that then you’re dealing with another problem saying and what can you do about that, something where the brain is damaged, nothing, and then it becomes rather hopeless. What Denise has shown us with her signs is the ability for this problem to temporarily reverse, there’s reversibility to it, which we have to try and harness and build on in peoples rehabilitation.

Audience I think one of the things that we’ve come across is you definitely need the psychologists report for FND because it’s a brain killer to be honest and you need some other back up not just from the physical side, it is a mental strain on both patient and carer but I think there’s a tendency for a lot of GP’s to say well, go get some physio and here’s some painkillers and have a look at the website, the classic line and you’re kind of left to it.

Dr Stone What I’ve found interesting is that if you’ve got Multiple Sclerosis, and someone says what do you think we should do for people who’ve got Multiple Sclerosis, well physiotherapy, psychology, occupational therapy. Psychology is right in there, and it is helpful for any chronic condition and FND more so as there is aspect of it where you’re trying to get control of your body, you’ve lost control, and the treatment is about trying to get that control back. And I think that was one of Bridget’s questions, what can a psychologist do if I don’t have trauma? And the answer is lots, they do lots of things and the thing we are stuck with is this idea that the psychologist is only there to look for hidden trauma, to unlock the key and you’ll be fine again. That’s not the case, there’s lots of very useful things they do.

Audience My wife has been told as well that she has borderline personality disorder, so that’s one of the issues they think has spurred on the FND

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Dr Stone If you have that then that creates vulnerability for FND, but most people with FND do not have that so it’s a bit like everyone is different.

Question Twelve

Audience I found that I was able to help myself from January by doing juicing, so on top of having my 5 a day, and my normal meals, I now normally have 10 a day vegetables as juice on top of my meals. I’ve found that my fatigue is pretty much gone, and my pain is decreasing with that as well and pain was one of my major issues with FND. I looked online to see if there was any reason for that but I can’t see anything, but I find that it really does help for me, and wondered what you think of that.

Dr Stone I do know people who have described changing their diet and it’s really helped them and the sorts of changes that people have described helping have been really different, so that leaves me feeling a bit confused. I think what they probably all have in common is that they are quite healthy changes, and also there’s a feeling of taking control of the situation, and when I talk to people about what they’ve done and the say I’ve changed my diet and we talk a bit more and actually they are doing some other things as well, so sometimes changes of diet go along with changes of lifestyle, so I think it’s interesting and I’ll keep an open mind about it, but I think it’s quite difficult to know why its helped the individual and how you can apply that to other people.

Denise Can I just say that when I had got better the last time, that it was all about being positive, and I think that’s what answers that question there, because it’s about being positive and being determined to do something better for yourself, and I think that’s basically what that comes from.

Dr Stone I agree and if you’re in diagnostic limbo and you don’t know what’s wrong and you’re not sure have they missed something, it’s very hard to be positive. It’s hard to be positive anyway all the time, I don’t think it’s realistic to be positive all the time, but I know what you mean.

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Question Thirteen

Audience With regards to like neuro-physiotherapy and neuro-psychology, how easy is it to get referrals to that as a carer or partner of FND, she’s tried, she’s seen Dr Murray and tried all this and tried different techniques with that as well for physio, but it’s not the specialised side of it, it’s hard to get to see that specialised side of it. Is there any way or is there even any private practitioners of that?

Dr Murray I think that’s what we need to change in Glasgow, I’d love to have a rapid access outpatient physio for when relapses and things are bad, and for short, sharp re-education session to help get your body doing what it should be doing,

Melanie I think you know that unfortunately sometimes it’s resources in the area that you’re living in are not ideal, so we’re maybe up against it a wee bit there, and obviously you’re entitled to physiotherapy within the NHS, and in the Glasgow based neuro-physiotherapy there is a vacancy at the moment within the Glasgow service but that will be rectified, There are private practitioners that are able to offer neuro-physiotherapy, obviously I can’t endorse anybody but if you googled it and put neuro-physiotherapy private Glasgow onto a web search it should come up.

Audience I find it very difficult although I’ve participated in anything I’ve been asked to do to improve my stress levels. It can be very difficult when you’re saying do this or do that and you’re not getting some recovery, then it starts to become difficult as a sufferer as you’re seen as malingering or it’s your fault for not getting better, so obviously there’s the psychological impact in that as well. I’m just trying to understand FND and trying to get the right treatment for it.

Dr Stone You make a really good point there about what happens when you don’t get better. What do people think? Sorry I lost the train of my thought there. I think there’s a problem, there’s part of this attitude to this problem that you see in health professionals to functional disorders is that they sort of have this idea that so if there’s nothing really structurally wrong with you, everyone ought to get better, and we know that is just not the case. We know that large numbers of patients do not get better, and that includes people I see, people that I’ve got on well with and they understand it, and they’ve had access to good treatment, hopefully it hasn’t been our fault, it’s not been the patient’s fault either, but they just have a condition which is chronic and difficult to treat. What’s interesting to me as a neurologist, is I’m seeing other patients for example with multiple sclerosis who also have conditions which are difficult to treat, who have progressive MS, and people understand that this is the case, but somehow the patient with chronic functional disorder doesn’t quite get the same feelings that they have a chronic condition. What I say to patients often is however long you’ve had this you’ve always got the potential to improve, I’m never going to tell someone they will improve as you never know, but they have the potential to, that’s the difference between FND and MS, to try to hold onto in terms of hope.

Dr Murray And you absolutely shouldn’t feel it’s your fault if you don’t get better.

Audience But you do, you do

Dr Stone That was one of Bridget’s questions she asked me to ask, which was ‘Am I the reason that I’m not getting better?’

Audience I’ve actually been told by several professionals that it’s me, and you know that they will not treat me because it is me and it becomes increasingly difficult as you know you’re trying your hardest, most people, especially if you’ve got it really bad, who can’t use their hands, can’t walk or whatever, if you do lose your job, even if you try to re-train you lose your other job, there’s financial burdens and everything that comes along with it, then to be told be professionals who you trust that it’s your fault, it breaks your heart because you know you are trying. It can be extremely stressful

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Dr Stone I think patients should at the very least should have doctors who listen and explain what’s wrong and doctors should hopefully expect their patients to work hard and understand that to do their best and if things aren’t getting better that’s just the way things are sometimes.

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Question Fourteen

Audience It wasn’t so much a question, just my own personal circumstances, I started off with migraine and then went to sort of freezing episodes, and then the tremors started. I went from neurologist to getting an MRI scan to go back to the neurologist and get put on amitriptyline, to see if it was anxiety related. I then got referred for a second opinion to a movement specialist, who then after a thorough examination said right away, you’ve got a functional movement disorder. Then after that on the internet, the first thing I seen was your website, and from that in a week I actually got better. I’ve been told my neuro-psychologist appointment will be a three or four months wait, which for me I’m quite happy as I’ve actually went back to work after being off for six months, and I think I’ve got in my head that I need just this little bit extra help to try to reverse it to get a little bit better. Just having that diagnosis, told face to face, was a big thing for me.

Dr Stone It’s very good to hear that

Audience It was Dr Muket, who was my specialist. He’s very good.

Dr Stone So what do you think it was about having the diagnosis, that helped you, that enabled you to start to improve?

Audience I think what was making things worse for me was the fact I was being tested for Parkinson’s and brain scans, that type of thing, and coming back as nothing, no problems there. My mind was racing trying to think what is it, could it be this, could it be that, that type of thing. And I think once I got the diagnosis, was like a weight off my shoulder. I still have symptoms and that but the amitriptyline is keeping the headaches away, which is a good thing.

Dr Stone I think this shows the importance of getting people out of diagnostic limbo which is a terrible state to be in, as you don’t know what’s wrong and it could be anything. That can become very consuming and start to make things worse. I’m wondering about time as we’ve gone on and I’m looking at Bridget’s list of symptoms, questions sorry, and I think we’ve gone through and nearly covered all of them so I hope Bridget will be happy with that. Can we make this the last question?

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Question Fifteen

Audience For me it wasn’t just the fact that I seen yourself, you diagnosed me, and having the diagnosis was amazing, because I didn’t know what was wrong with me, but not that I think what changed it for me was when you said that you believed me, and for me that’s the biggest thing that anyone could ever say because I had been made to feel like I was a fraudster, I got told I put seizures on for attention, so seeing yourself and you saying I believe you was probably better than finding out what was wrong

Dr Stone It was probably a combination, yes. Ok I think we’d better wrap up as we’ve over run massively, so thank you very much to everyone for coming. I think some of you came from Inverness?

Audience I’m from Kyle of Lochalsh

Dr Stone That’s a massive trip

Audience Telford

Audience Liverpool

Dr Stone Telford and Liverpool. Gosh, thank you for coming. I don’t know if there’s something going on after this but I did say to Bridget I’d be happy to do other events, two to three times a year, just to keep people updated, so I hope I’ll maybe see some of you again. If you have any feedback for me about the site, I wish I had more time to update it and improve it. I’m planning on big improvements at some point, with video and other things planned but that will be further down the line, but if you have any feedback for me or if anybody has a story they would like to write on no more than two sides of A4, I’d be delighted to receive it, and publish it, you can have it anonymously if you like, I think those stories, from my experience, really help other patients, just in your own words, I think that would be really helpful.

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