What did the consultant say

Everyday living
1

Hello,

At some point a consultant has had to tell you that you suffer from an incurable disease called multiple sclerosis. Maybe a consultant will need to tell you another piece of not very good news.

Do you feel that the information could have been given to you in a more sympathetic way? I was diagnosed in a very matter of fact and unsympathetic way in 1995. When I was diagnosed there was little old me (actually I was only 40), the consultant and a number of trainee doctors and it was like it or lump it time. I believe this attitude is still very much alive and kicking today.

Was the consultant in a rush and abrupt with the diagnosis or do you feel the process was well handled? Could the information have been communicated to you in a more sympathetic way?

Tell me how well the diagnosis was handled.

Patrick

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Well said Patrick - I always feel as if my MS clinic is a rush - I recently had an MRI scan and when I went to clinic -they just said that the lesions were typical of MS…and that was it…

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I was told I didn’t have MS. Today I think the news would have been that I did have MS or CIS at least (having seen the discharge report from the hospital: 2 lesions plus positive O bands in CSF). The discharge letter said words to the effect of, ‘we won’t mention MS if she (i.e. me) doesn’t’. And of course in the pre internet days I was clueless and remained that way for a long time.

5 years later and about 6 relapses lived through, a very nice kind neuro asked me what I thought it was, I said ‘MS’ he said ‘so do I’. He then promptly retired. But he was very nice and even showed me some white spots on the MRI. And referred me to lovely Dr Giovannoni at the National Hospital, where I was prescribed DMDs as they had just been given the go ahead under the ‘risk sharing’ scheme.

I think the original non diagnosis was handled exactly how the NHS were inclined to behave back in the pre DMD world. And I suspect that my life for the 5 years between original tests and ultimate diagnosis would have been utterly different, in a negative way. I would have been much more cautious in my life choices particularly with regard to my career.

Today I would be horrified if someone was given the same non diagnosis. But that was 1997.

Sue

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Hello Ssssue,

Dr Giovannoni is now Professor Giovannoni and he is still lovely and a wonderful man. Very empathetic. Do you read http://multiple-sclerosis-research.blogspot.com/, that’s his baby.

I fear that too many consultants still treat diagnosis of MS as something that has to be done and essential communication skills are conspicuous by their absence. Diagnosis was consistently appalling and in many cases it still is judging by my conversations with other people. Hence this enquiry.

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Back in 1998 I was told to my face that I did not have MS, only to be informed by letter that I did a couple of weeks later. I liked his sense of humour.Fortunately, I had worked out it was PPMS years before (there are no approved treatments), so the news was hardly a shock. Being told about ldn would have been useful though.
Personally, I am not bothered about how I am told, because it doesn’t change anything and only look for honesty.

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I know. I secretly quite fancied Dr G. And yes, I still read the blog. He’s utterly brilliant. And I was lucky to have him as my neuro. Ultimately I changed to someone slightly more local a couple of years after I moved to the South Coast. But I think anyone lucky enough to see him is fortunate.

Sue

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Last week neuro told me looks like I have ms but that was from a phone conversation he had with someone, because my MRI result had not been sent across. He was a nice man. Sympathetic and understanding, however, a week later and that’s all I know. I’m chasing it up but I guess he could only tell me what he knew.

I feel that organization is poor and the lack of communication I am receiving is very poor.

That is the most important thing to me. Honesty and information. And that is was I’m lacking.

8

In 2003, following a bout of numbness / MRI’s etc, I went to see a consultant who asked how I was. When I said I’m fine, he said that’s good else I’d be d/x’ing MS.

Finally got the official D/X in March 2010 whereby I was told I had got “mild MS”. When I asked if I needed to tell work or DVLA, the guy said no. I later…much later got an MS nurse who told me to inform DVLA but work was really my choice.

It certainly wasn’t put to me as good as it should have been.

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This tells a tale that for some reason- Noone seems to receive the care and attention they deserve at such a difficult time

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hi

i was unusual in that my neurologist was brilliant.

not an ms specialist but was the one from salford royal who does outreach in my area.

he really listened and if i mentioned something which was neurological symptom wise he would lean forward and nod.

this made me feel that all my symptoms mattered.

he was very interested in knowing about my work and understood that i needed answers and soon.

2 months later he sent me a text saying that it was pointing to ms but i would have another mri and a lumbar puncture.

i was happy about this but he actually rang me to say that he hated having told me by text.

when it was all confirmed he sent me another appointment.

meanwhile i’d broken my big toe through drop foot.

when he saw me he was so concerned although i was joking about it.

like sssue, i became quite enamoured of him.

i really wish that everyone with ms could have a neuro as lovely as mine.

he was really frustrated with the NHS and it’s slowness.

he is german and said that in germany a gp refers you to neurology and within a week you were seen.

he transferred me to an ms specialist so that i could start treatment.

carole x

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My actual dx was something I had been gently prepped for during earlier consultations, so it was not a surprise. The formal news was delivered kindly, briefly and clearly, which was what I needed and all I could deal with at the time.

Alison

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Hello catwomanCarole58

​Yup you are lucky to have met such an honest and good natured consultant.

The German health system is quite different to the NHS. There is private and public medical insurance and it is more like a business. Each hospital will deal with A&E but also has a speciality so there could well be several hospitals in a city even one as small as Heidelberg.

My frustration is that is that too many consultants in the NHS seem to treat the illness and ignore the person as well as the issues that come with the diagnosis. I think this a problem with the training.

Patrick

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He told me after looking at my Mri and lumber puncture results that he was 99.99% certain that it was ms. Then I think I went into shock as everything else is a bit of a blur and I had told my daughter to stay in the waiting room. I remember him saying that just to live my life the best I could.

He may have said that I had progressive ms but it wasn’t until 6 years later that at my ms nurse I found out was dx PP, That was scored out and SP was inserted.

Apart from an appointment 6 months after dx, I have never seen my consultant. My MS nurse is fine though.

I think I just go to my yearly ms nurse appointment to keep her in the loop because of pip.

Mags xx

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I had my first attack in November 2000. I had an MRI scan but the results were given to me by a junior doctor, something I have since learned is bad practice. He talked about myelin and a relapsing-remitting condition. He didn’t mention MS, or suggest that I saw my GP or a neurologist. I didn’t get a proper diagnosis till 2004 when I had a significant relapse. My GP told me that the original diagnosis based on my MRI was “possible MS”. He was able to get me an appointment with a local neurologist who confirmed the diagnosis.

My GP was quite straightforward in the way he told me that I have MS. At the time I was relieved because I was finally able to put a name to my condition. I’ve seen three different neurologists over the past 13 years. I wouldn’t say they’ve all been caring and sympathetic, but none of them has been condescending or treated me like an idiot. They’ve all listened and offered appropriate advice when I’ve asked for it. That’s the most important thing, to me anyway.

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I think I’ve been lucky too in that so far both neurologists I have seen have been brilliant!

Both from Salford Royal, the first one I saw, Dr Talbot, was very sensitive in the way that he dealt with my case: at that point (2010) it was the first presentation of any symptoms, initially thought to be a stroke but upon further investigation turned out to be demyelination due to either ADEM (don’t even ask me to spell the full version!) OR the first signs of MS. After 4 years and what seemed like an almost full recovery it was assumed that it had been a one-off case due to a HepB vaccination at the time.

In mid 2016 I had a full-on relapse and MRI’s revealed multiple new lesions in brain and spine and I was referred to the care of Dr Pace who was just as personable as Dr T had been. Took his time going through the timeline of events with me, asked me how I felt about it all and confirmed that it was MS after all. He was very caring and none of it felt ‘rushed’ y’know? :slight_smile:

He really took the time to let it sink in. He said that as it appears to be somewhat aggressive he is going to ‘watch me like a hawk’ and scan every 6 months whether i have new symptoms or not so if any new lesions appear it can be classed a relapse and so start treatment. He was very reassuring. :slight_smile:

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No neurologist. It was the GP who told me, after MRI, ‘just to rule out anything nasty’ in other words to shut you up once and for all, just phoned me and told me to make an appointment, she did look quite embarassed as at that point I had seen every doctor in the practice over a number of years, it clearly wasn’t gout or the fact that I drove a small car!(which I didn’t realise was a medical diagnosis, I just told him I drive a small car because I’m a small person!) I did get a neuro apt.very soon after though, on a Sat. if I remember rightly at the end of the neuro’s private clinic,so same neuro but on NHS.

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I was diagnosed in 2006 on my second visit to the neurologist. The neurologist was abrupt and disinterested. My first visit which was less than five minutes he said, “you’ve either had a stroke or you’ve got MS, you need an MRI scan” Six months later I saw him again, he was no less abrupt and just as disinterested, and told me I needed an MRI scan, lumbar puncture and evoked potentials test. I told him I’d already had them. He then made a couple of phone calls. He never did get the result of the evoked potentials, the lumbar puncture was inconclusive, my GP had already told me that. He didn’t tell me what the MRI scan revealed, but did tell me, “You have progressive MS there is no cure and no treatment” I asked if there was anything I could do to help myself, he told me, “avoid heat, avoid exercise, avoid stress, if you get an infection get it treated quickly” with that I was dismissed. Consultation over.

I’ve now had four neurologists. No 1 abrupt and disinterested; number 2 was an MS specialist and he did at least listen to me and answer my questions, but I was making a 100 mile round trip to tell him I’d got worse and for him to reply he’d still got nothing to offer me, so then I was referred back to my local hospital. Neurologist number 3 saw me twice then discharged me because he couldn’t do anything for me, his words, not mine. I saw no one then for about three years then got another referral to number 4 another MS specialist which involves a 50 mile round trip, but at least I was back in the system and getting an annual review. However my last appointment was cancelled and I’ve heard that he’s no longer routinely seeing anyone, only the “interesting” cases.,

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Diagnosed in May 2015. Three episodes of partial right side paralysis in as many days. The last one being the most severe and lon lasting, on a Saturday morning. This saw me in an ambulance to A&E, a barrage of tests, MRIs, Cts, bloods etc. Admitted to a ward end of day and still paralysed. Having lost a sister to a brain tumour, that thought had crossed my mind briefly, but decided it was all too sudden for it to be a possibility. I wasn’t unduly concerned to be honest, more puzzled I think. Various teams of medics came and asked questions, did physical exams etc

Monday afternoon the ward consultant that I had met on admission came to me, sat on my bed with a trainee and a nurse and asked me if I was familiar with the condition MS. Multiple Sclerosis? I remember nodding dumbly as he told me this is what I have. He told me, reading the mri report, he was 99.9% certain it was MS, but the Neuro would see me later and she would confirm. He rambled on about two white plaques being visible, as he touched the top of his head, telling me there are many types of ms and “one size doesn’t fit all”, to believe in positive thought. As my tears welled up, he asked if I had any questions. I managed to get out “too much to take in” and shook my head. Thanking him! Thanking him for giving me this earth shattering information!!

The nurse put her arm around me and asked if there was someone she could phone. I told her my husband would be visiting shortly. She felt that was wrong, to tell me without anyone being with me for support. I dryly told her it wouldn’t have changed anything. Asking me if I wanted her to stay or leave, as my crying really began, I had to insist she left me, as I waved her away. I was acutely aware of the voices of visitors at the nearby beds, outside my cubical curtains, their chatter. The tea trolly rattling along. I thought how it felt when, in the past, I’d experienced a bereavement. The death of a loved one, my father, mother, sister, grandson…the world doesn’t stop. People carrying on as normal, walking, eating, talking, just living their life while I felt mine had almost stopped.

My Neuro came to me at 8pm that evening. As she introduced herself, she did a quick physical exam and said there was no doubt it was indeed MS.

Friday, to my knowledge, I was fit as a fiddle. Monday, I have MS. And the rest as they say, is history…

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Aw Pops, I knew it was a fast diagnosis, but that’s the first time I’ve read your journey from symptom to diagnosis in full. How bloody horrible. Nothing more to say.

Sue

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Yep Sue, life’s bitCh. They way I try to look at it is, it could be so much worse. I could have been told I had an inoperable brain tumour, like my sister, and know what lay ahead. It could have been Motor Neuron disease. I know someone who passed away with this last year. Unthinkable. I could have been told it was terminal.

I was aged 55 at diagnosis. Healthy, happy, well travelled, two daughters now independent adults and a wonderful husband, now my registered Carer. I’m able to go away for another week in the sun abroad in June, with airport assistance and my wheelchair. I live in a small cottage type bungalow in Ireland, with crappy weather but stunning scenery from every window. Today the sun is shining, so I’m going to shuffle into my Sunroom/porch and count myself lucky.

Today that is. Tomorrow I might be raging and tearful and asking “why me?!” wink

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