Path to diagnosis of Parkinson’s disease

The process of managing the diagnosis and treatment of illness in the NHS has always been divided between the primary care team (the GP) and the hospital. The GP, as the first person people often see, assesses the symptoms the patient describes. If the GP suspects the person has Parkinson’s disease they should be referred quickly. Before treatment is started, they should see a specialist with expertise in the other possible diagnoses (NICE- National Institute for Health and Care Excellence guidelines 2006).

GPs act as ‘gatekeepers’ making sure that the hospital is not flooded with requests from people who are worried about symptoms or having conditions which do not need hospital management. On the whole this system works well. The GP will assess the symptoms that are being presented, and decide when to refer to a specialist and when to wait to see if the symptom goes away by itself. Sometimes a symptom does not immediately suggest a definite diagnosis or require urgent treatment so the GP may wait for more symptoms to appear which may point more clearly in the direction of one diagnosis rather than another.
The experiences of people who have Parkinson’s disease suggest it can be very hard to diagnose, especially if the early symptoms are not the typical ones of tremor, slowness of movement and muscular rigidity. Many of the more subtle symptoms which are not specific to Parkinson’s disease may be present for months or years and can only be seen as early signs later, when looking back. The gradual start of symptoms can make it very difficult for a GP to make an early diagnosis, because there are no specific tests for Parkinson’s disease. This sometimes meant several years of vaguely worrying symptoms which doctors may not have been certain of the cause of or may have misinterpreted. Although this can lead to anxiety and frustration, there is no evidence that any current treatment slows the progression of the disease, even though treatment can relieve many of the troublesome symptoms.

Jeans early symptoms of Parkinsons disease were confused with what may or may not have been ME.

Age at interview 72

Gender Female

Age at diagnosis 64

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I used to get like top of me left, at the top of me left leg, like a nerve kept jumping. And I had that on and off for about a year before it started to, it worried me. And then when I would get up and I was moving about it would stop again. And then when I sit down I used to cross me legs somehow to stop it moving and it could do that for a couple of hours. So I thought, Oh, it probably is just a nerve But then I started getting, as I went to move sometimes I, I found me feet wouldn’t go as I wanted them to go. And my husband come home one evening from work, and I was really bad with me legs, and he said, I’ll take you down to the doctor’s. You’ve had that for a long time And I went down to our doctor’s, and they’re a practice, they’re one of six. And if you go down you can see anybody without an appointment, but you can’t see your own one unless it comes up you can. Anyway he spoke to me and then he said, just said, Wel you know, he couldn’t see anything, It will be all right So from that time I, I really did sort of just struggle along. I used to get up with My husband, do his sandwiches for him to go to work. Then I would do that, then I would sit down, have a cup of tea and a slice of marmalade or something. Then that would give me just enough energy I could clear up in the kitchen and then have to sit down again. And from then I would go up the stairs. But it got me half, halfway up the stairs, then I had to sit down because I thought me legs wouldn’t carry me.

You were talking about going up the stairs?

Yes, I would go up stairs I got up and, in three, three goes. I’d have to sit down and have a rest. And I could get, get up and off of, off of the bed. I’d make the bed. And then I had to shower while I was upstairs because I knew I’d never get back up, up them again. And that was all I could do. But in between this while I had that ME with it and I didn’t know. So I don’t know what the symptoms first of all, whether they were the ME or the Parkinson’s. Because they both, they sort of both come together.

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Both the GP and the first consultant she saw had told Jean that she had nothing wrong with her. She saw several GPs in her practice over many months which meant that the cumulative, progressive nature of her symptoms was not recognised. After a year, she arranged a private consultation with a neurologist. Jean feels the system let her down and needlessly wasted a year of her life.

Rachel saw how difficult it may be for a GP who does not know you well to make an accurate…

Age at interview 76

Gender Female

Age at diagnosis 70

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I haven’t found the Gps very helpful I have to, they. Partly because I, I don’t know, it’s very difficult to know how you seem to other people. But the, the GP who knew me well has now retired. He knew that I wasn’t myself, he could, he, one’s facial expression changes and he realised that I was no longer animated in the way that I used to be. And he knew, knew one very well. With a new GP, it’s difficult for them, I think. I think it very difficult for them to assess what your normality is and what your circumstances are, how you live your life. It’s, it’s a very difficult job, I think, for a GP who perhaps sees you five minutes every six months or more rarely if you’re lucky. It’s very difficult for them to tell what you were like or have the power of being like, and I don’t know, especially with a thing like Parkinson’s, when you go into a situation like a doctor’s surgery you, you seem to get an access of adrenalin or something which makes you behave in a perhaps a, well I just don’t know whether enough is known about the disease and what it is like to have it. I think it’s very difficult for doctors to assess that.

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Several people we talked to were referred to a neurologist straight away after seeing their GP, but in some cases there was delay as other diagnoses were considered first.
Rachel had been given the diagnosis by a new doctor who didn’t know her. When he looked up her symptoms in a text book she had difficulty trusting his conclusions. Philip’s GP knew him but saw him only occasionally which made it easy for the GP to recognise that his face had lost some of its usual mobility.
Some people felt that their GP had been slow to recognise early Parkinson’s disease. Humphrey, who had worked out that Parkinson’s was the likely diagnosis, was told by his GP that he was probably wrong as he was too young. The neurologist he later saw confirmed the diagnosis after a 5 minute discussion of his symptoms.
Several people returned many times to their GP, and were given treatments for such things as anaemia, frozen shoulder, repetitive strain injury, trapped nerve, ‘nerves’ or depression. Others were told there was ‘nothing’ wrong or that whatever it was would get better. Though Joe was referred to a neurologist he thinks his GP was actually very surprised to learn he had Parkinson’s. Gaynor became increasingly convinced that she did not have a frozen shoulder though several GPs insisted that she did. She finally consulted a GP she had been told had a special interest in neurology and he confirmed her suspicions. Eddie suggested to a locum GP that his tremor might be caused by PD but she didn’t think so and the diagnosis was not recognised until he saw his own doctor.
Waiting for an appointment was an anxious time. Some people hadn’t been told why they were being referred, and they were imagining all sorts of seriously illnesses, multiple sclerosis, brain tumour, or motor neurone disease. GPs might not want to tell a patient about their suspicions in case they worry their patient unnecessarily and might prefer to wait for the consultant to confirm the diagnosis? David said that the GP he consulted about his repeated falls tested his co-ordination and took 10 seconds to make up his mind and then tell him he might have ‘a brain tumour or a lesion‘. This was obviously a mistake and his GP might have done better to have said nothing.
The wait to see an NHS consultant neurologist was often long for the people we interviewed in 2008. Understandably the offer of an appointment in 3-6 months caused unbearable anxiety and several people decided to ask for a private referral. When David was told an appointment would take 16 weeks his family clubbed together to pay for a private consultation. Rafa was told there could be a six months wait and since he had recently watched a friend die from a brain tumour and worried that this might be causing his symptoms, he decided to go privately. Current NHS guidelines are that all patients with suspected Parkinson’s disease should be seen within six weeks. If the GP suspects a brain tumour or the later stages of Parkinson’s disease as a cause of symptoms the patient should be seen within two weeks of referral.

Nicolas was slightly surprised that the NHS consultant had a different view on medication to the…

Age at interview 47

Gender Male

Age at diagnosis 44

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I saw, the consultant I first saw tried three different types of medication on me, so Sinemet and two others, I can’t remember, Ropinirole and one other I can’t remember. And they had, over a short period of time they had little effect or no effect. So he felt there was little point in managing with medication. Also I wasn’t too badly affected and his advice was to manage as long as you can without medication. I subsequently changed to the NHS list and saw a consultant in his team whos approach was some what different and suggested that I ought to try medication and that’s when I got offered Mirapexin.

So I just think it was a different approach. The original consultant advised not to use medication unless you felt it necessary. And the new consultant suggested that you ought to use medication as soon as you can. So, just a different opinion.

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Gaynor admits that going privately is plusher but believes that the approach is changing in NHS…

Age at interview 54

Gender Female

Age at diagnosis 51

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The environment you go to when you go to the NHS it’s so different. I mean, you know, that’s just life isn’t it? You wait in the corridor, you know, and it’s, everybody [laughs] all the Parkies are there at once [laughs]. But I know one or two of them now so we have a bit of a chat [laughs]. I know I went to the clinic it was all plush and, and, you know, but then again, what else did he say? Yeah he said, you know, Join the Parkinson’s Society. He said, You won’t be able to take anything in now. Which is right, you know. But everything is so rushed in the NHS. You know you’ve got your few questions to ask and he answers them, and then he’s writing down your next appointment and that’s your cue to leave, you know. But I haven’t felt that I needed any more at the moment whether I will in the future. And now that, now that we’ve got [the Parkinson’s nurse] it’s a lot better and she was there last time I went to see him. So, but it is a very medical approach, inevitably. But I think there’s going to be more and more pressure from people, you know, especially with, when people go to hospital about taking their medication on time and things like that, it’s crucial and, you know, the education of nurses and junior doctors and things is, you know there’s going to be more and more of us about isn’t there?

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Most of the people who consulted a neurologist privately had been accepted back as NHS patients by the consultant they had seen.
After taking a careful history the neurological specialist does a detailed clinical examination which can involve examining gait, stance, and finger and hand control movement. There are no laboratory tests or other screening methods which can confirm the diagnosis of Parkinson’s disease. However many of the people interviewed had been given blood tests. Penny’s thyroid function was tested because she was complaining of exhaustion, other blood tests had been used to check on general health and sometimes to rule out other conditions that could be causing their symptoms.

Angelas GP had no idea what was wrong with her but agreed to enter her for a nerve trial. Once…

Age at interview 59

Gender Female

Age at diagnosis 55

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Right well I first thought there was something wrong about probably getting on for fifteen years ago now. Almost imperceptibly I seemed to be losing the use of my left side and I went to the doctors, it never, it was so imperceptible no shake, no tremor, no nothing, I just felt that my left side wasn’t doing the things that it should be doing. And I had shoulder pain and elbow pain and neck pain and hip pain, knee and ankle and foot. And it got progressively worse and I kept mentioning it. I never went especially for it but it was irritating me, it was in the back of my mind the whole time. And so I got treated for frozen shoulder and tennis elbow and all those things, which I didn’t particularly feel were the cause of it, however they were symptoms. And then the tremor gradually began to show, all left side, nothing on the right side. And because I think I’d been such a pest I went to my GP and he said, I said, "Look you know this arm it’s really, it’s not behaving properly."

So there happened to be a trial on at the hospital, the local hospital and I went in there and it was a nerve trial and so they sat me down and sent currents through and apparently there was absolutely nothing wrong with the nerves and messages going through the nerve pathway and from then on everything happened very quickly. The consultant who, the person who actually did the trial I didn’t see again but the consultant who was obviously over, in control of the whole thing had me to go and see him and did various tests and things and it was determined very quickly that I’d got Parkinson’s. And from then on everything happened, that was about three years ago, yes three years ago. And the treatment since then has been absolutely fantastic, I cannot fault it at all.

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Many people had had an MRI scan but most of them understood that this was not to diagnose Parkinson’s disease but to exclude other conditions such as brain tumours. Only Rafa who lives in Scotland was given a brain scan known as a SPECT or DaTSCAN which was able to confirm that the area of the brain known as the corpus striatum, which produces dopamine, was not functioning properly and so confirmed the diagnosis of Parkinson’s disease. SPECT or DaTScans are not performed routinely but are carried out if there is doubt about the diagnosis to help rule out other causes of symptoms. However, the scan is not straightforward to interpret and assessment of symptoms and response to treatment may be as effective in reaching a diagnosis.

Fionas husband had to have a second MRI scan because the first had been inconclusive.

Age at interview 46

Gender Female

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John went for his MRI Scan and I can remember [waiting for the results] it was a Friday afternoon and we came back in from work probably and there was a message on the answering machine, and it said, This is the clinic we need you to contact us because we need to repeat the MRI Scan So I got that in my head that, for some reason, oh it isn’t Parkinson’s they’ve found it was something else. On the other hand my husband because he felt it was very difficult lying still, having that whole procedure done, for him it was like, oh my goodness I’ve got to go through all that again so it, and all it was, they did need to repeat it but it, I thought, in hindsight that just to be left that message on answering machine on a Friday night and for us to worry all over the, the weekend. I felt, they may as well have just left it and, you know, contacted us on the Monday really.

So he went along, had the other scan and we went back to see the consultant and he said as far as he could tell, and I can’t remember the exact term he, he used but he said it was his clinical diagnosis that it was the early onset. And really he would be guided by my husband as to how he felt as to, he didn’t feel at that point the consultant that my husband needed to start any medication.

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Ruth was scared by the prospect of having a brain scan though she was told it was just to make…

Age at interview 56

Gender Female

Age at diagnosis 47

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I was told I would have to go and have a brain scan just to make sure that everything was okay. So I had that and that came back fine. That was alright. I was a bit frightened really at first, mainly because I didn’t know what it involved and nobody, nobody told me. And I didn’t know, oh no my brother-in-law had had one, and I asked him about it and he tried to explain it in the best he could. So I had a rough idea before I went. But it was a bit scary because you, you know, I was thinking oh a brain scan this is really serious stuff this. But, when I actually got there and I had it that it was okay, it was fine, and the technicians that, that did it and that were really nice and explained it step-by-step as they went along, what it would involve and why I was having it and that. But that bit was okay I didn’t mind that so much.

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One method sometimes used to confirm the diagnosis of Parkinson’s disease is the therapeutic trial. A drug is used which will relieve the symptoms of PD but will not affect other conditions such as familial tremor with which it may have been confused. This method was used in several of the people interviewed. Particularly, it seemed, those with very early-onset Parkinson’s disease like Tom, Karen and Helen. The drug used is dopamine, although once the diagnosis has been made and even though it may have dramatically relieved symptoms, it is usually not continued, especially in young-onset PD patients (see Managing medication for Parkinson’s disease).

Tom thought that because some pink tablets relieved his symptoms this meant he was OK. He didn’t…

Age at interview 40

Gender Male

Age at diagnosis 27

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I first suspected there was something wrong when I was travelling and I was writing a postcard to a friend of mine in, in Australia whose name is Anthony Diecopolis. And, and I got to the Anthony Diec and I couldn’t finish the opolis. And it’s very strange my hand had sort of gone into a sort of spasm and it just wouldn’t, wouldn’t finish writing the, the, the word. And so that’s a bit strange.

And so I went when, when I got I, I went to the doctor and said, What on earth’s going on And I had since then I’d also developed this slight tremor in my right hand. He said, Well it’s probably, Essential Tremor or trapped nerve or something like tha. And anyway, then it got a bit worse and then I was, I was recommended to go to a neurologist. And the neurologist had a look at me and gave me some pills. And he said, Come back and tell me if these wor.

This is about, about sort of, nine months after my, my not being able to finish the, the postcard. And, and he said, Take these pill. And the pills worked. Magically the tremors stopped and I thought this is wonderful. And so I went back to the neurologist and I said, Yes everything’s fine now. The pills have, the pills have worked And far from looking happy about this he looked rather, rather grave and he said, I think you’d better go to another neurologist

And so I went to another neurologist and he said. He did loads of tests, you know, and doing all this, and the usual things that become very natural to me now. All the sort of tapping the foot and banging the hands on the table and stuff. And, and he said, You have something that is within the, falls within the parameters of Parkinson’s diseas. And I thought, Parkinson’s disease, it can’t be Parkinson’s disease, that. And you know I’d associated Parkinson’s disease with elderly people as most people would and I was twenty-seven at the time.

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Karen looked for information about the pills she had been given on the internet.

Age at interview 45

Gender Female

Age at diagnosis 39

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I didn’t know what was wrong with me so I went to see a GP. He thought it was repetitive strain injury which I didn’t believe so I went back for a second opinion. He then sent me to a neurologist to do many tests. After all these tests they could tell me what I didn’t have but they were unable to confirm a diagnosis and so was basically told to go away and get on with your life and see what happens over the next few years.

In the year 2000 I had a car accident and this had appeared to start a tremor. Over the following year, every time I was under any stress or anxiety I’d start a tremor down my right side. I couldn’t understand what was happening so I went back to my GP who referred me again to a consultant. Again I had a load more tests, again nothing was conclusive. They gave me a tablet to try. I came away and he didn’t tell me what it was actually for so straightaway I looked it up on the internet, then the word Parkinson’s jumped out at me. I didn’t really know anything about Parkinson’s all I knew was of people that were old and sat in the corner of, of a room with a nodding head. I was very frightened, very anxious, very concerned for the future, I didn’t really know where to turn. I didn’t know where to find any extra help.

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David explains the thinking behind the therapeutic trial.

Age at interview 54

Gender Male

Age at diagnosis 48

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There are some studies which have suggested that in the US up to twenty five per cent of all Parkinson’s patients in the US have been misdiagnosed. They didn’t have Parkinson’s disease in the first place but one of the things about Parkinson’s and levodopa particularly is that if it’s not Parkinson’s disease, levodopa doesn’t work. If it’s something else, then taking levodopa doesn’t help. So the fact that when they try you on levodopa quite often what they do even if it’s not going to be your initial like it wasn’t with me, I was on Mirapexin and Requip at the beginning, they might give you some levodopa just to see if it works as a diagnostic tool. So I’m in the in the first year or so I was, you know, is it Parkinson’s, isn’t it Parkinson’s? Might be something else. Might have been misdiagnosed but I’m quite happy now and content that that is what’s wrong with me.

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Sometimes consultant neurologists cannot give a confident diagnosis the first time round. They have also been known to make a wrong diagnosis.

Elaine was given a thorough examination the first time she saw the neurologist.

Age at interview 44

Gender Female

Age at diagnosis 43

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Yeah, the first time I ever saw her before I was diagnosed she did do a full examination. She wanted just doing have a look at all my limbs and everything because I did have a problem with my foot which we realise now isn’t really connected to Parkinson’s. it’s something separate which is why I haven’t mentioned it. But she noticed that straight away because it’s not quite right. But otherwise that was it really she just had a look at all my limbs and was looking at me shaking. Had me do some co-ordination movements and things that made you feel very silly actually. She wanted to see how I walked and I just think what she did, marching on the spot with my eyes shut, that was another one.

And I did turn to the left actually, I was moving, can’t remember it’s all a bit of a blur really because you don’t I was sort of nervous when even though I work in that environment I’m always nervous when I go about myself which is probably one of the reasons that [my consultant] likes you to take somebody with you so that you’ve got somebody that can tell you what happens.

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Natalia saw a consultant who dismissed her symptoms and seemed irritated by her suggestion that…

Age at interview 63

Gender Female

Age at diagnosis 55

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Anyway I went to see the specialist, and he was very cavalier and he only watched me walk over three yards. So you couldn’t really see within three yards whether my gait was changed or not. It wasn’t enough to see that. And he obviously didn’t like the fact that I thought I had Parkinson’s and that I had been reading about it, because he then wrote a letter to my GP saying, [this lady] thinks she’s got Parkinson’s, but of course she’s been reading about it. I will see her again in a year’s time Well, this didn’t solve my problem at all, because I knew there was something wrong with me. I guessed it was probably Parkinson’s and this man refused to diagnose it for me. So I went back to my GP and I had to ask to see a private specialist, which I shouldn’t have to have done. But this was the only way I seemed to be able to have to get it diagnosed.

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Wendy had had symptoms for five years before she saw a neurologist who said she had to wait…

Age at interview 62

Gender Female

Age at diagnosis 57

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I first suspected there was a problem because my arms didn’t swing and that was about six years ago. And I didn’t do anything about it of course for a while. But eventually I spoke to my sister and she said, Go and see your G. So I did and the GP said, I think I’m going to send you to see a neurologist.

And I went to see a neurologist quite quickly. And I went alone which was a mistake I think. And he said that he thought it was possible that I had PD. But the only way to be sure was to let the time pass and let the various different problems emerge. So I came home shaking, absolutely terrified. And my husband didn’t want to know, bless him. I think that’s a male normal reaction. And so I coped with it initially without knowing what was wrong with me, afraid of what it might be and with very little support which was very difficult.

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Early symptoms of Parkinson’s disease

The early symptoms of Parkinson's disease might not seem bad enough for the person experiencing them to think of asking anyone about them. Most people...