Not diagnosing MS

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Last night when I got home I was emotionally burnt-out. I had done an all-day clinic and saw many difficult and challenging patients with MS, both new and follow-up patients. My wife asked me if I had a good day. I replied that it had been exhausting and that I felt numb. She said there must have been something rewarding in my day’s activities? On reflection, there were a lot of small moments that made me feel I was doing something worthwhile. This is highly relevant because my clinical director has recently recommended I stop seeing patients so that I can focus on research for the last decade of my academic career. The question is am I ready to auction off my vintage patella hammer and ophthalmoscope and not see another patient?

The most satisfied patient I saw yesterday was a young woman in whom I was able to not make the diagnosis of MS. Her white matter lesions were non-specific, her CSF was clear (no oligoclonal IgG bands and normal neurofilament levels), she had a full set of evoked potentials, which were normal, and her neurological examination was entirely normal. She has a positive family history with her mother and aunt having died of the MS-related complications. After presenting with visual and sensory symptoms her previous neurologist had been influenced by the family history and raised the possibility of her having MS. The non-specific white matter lesions on MRI had cemented the possibility in both the referring neurologist’s and the patient’s minds. 

The tragedy of this case is that this patient has been living with the possibility of having MS for the last 6 months. Her anxiety levels were sky-high and she had already internalised the diagnosis and had started to behave like someone with a chronic disease. She developed ‘MS-fatigue’, which on reflection was due to anxiety and depression and had tragically turned down a promotion at work that required her to transfer to her company’s office in New York. On reflection, her symptoms were almost certainly due to migraine aura. She was not the only patient to cry in clinic yesterday, the only difference was that her tears were tears of joy. 

Not diagnosing MS is easier than undiagnosing MS, which is a topic I teach on frequently. There are many reasons why people are misdiagnosed as having MS, but it is much commoner than you realise. I am not sure if you are aware that if you have MS there is a 1 in 20 chance that you have another disease; if you are interested I have already covered this issue in a previous blog post

About the author

Prof G

Professor of Neurology, Barts & The London. MS & Preventive Neurology thinker, blogger, runner, vegetable gardener, husband, father, cook and wine & food lover.

17 comments

  • I am sure the personal contact ,however draining ,is invaluable both for you and your patients….and the instance you cite is proof of that .

  • It depends whether you trust your registrars. My consultant was brilliant, but so were his registrars. Gave me my diagnosis, cared for me and I had faith in them. I remember their names and they became Neurology consultants in major hospitals in and around London. So no, if you support them, why do patients need to see you?
    On the subject of MS diagnosis, I was more anxious not knowing, although I guessed what was wrong with me. I too have a sister that has been given about four different neurological diseases that her symptoms might be. I don’t think it helps not knowing. Nearly 2020 and the tools not there for an accurate swift diagnosis.

  • As a patient I have found you to be an excellent physician and it would be a shame to loose your help and guidance if you devoted all your time to research. Over the years I have seen that many consultants have found that trying to treat MS patients can be a thankless task but as a patient I want to say thank you for all the work you do for patients by seeing them AND undertaking research.

    Of course it has to be your choice where you concentrate your time and you need to feel happy and fulfilled. Good luck with whatever you finally decide.

  • My suggestion:

    Go three days a week and just focus on clinic work? Think of how this would impact on reducing waiting lists. You have 25 years of diagnosing patients and caring for them – invaluable experience. The other four days you could do things for yourself (not medical related). Run, exercise, cooking classes, Patti time degree in history or film-studies.

    I’m not sure why you feel the need to (1) work until you are 65 and (2) continue doing ten more years of research. There are enough young researchers coming through to take over with fresh ideas and plenty of energy. Do you want to become the old duffer researcher that you probably moaned about when you were a young academic?

    The bigger issue is about status. An ex-Professor of Neurology is a bit like an ex-MP or ex-Archbishop – you become a nobody. No more invitations to international conferences etc. Are you ready to become Dr Giovannoni neurologist? No more research grants to apply for, no more progress meetings, no more discussions with Pharma, no more sending emails at 2am. The upside – healthier person, better husband (less stressed), cure grandfather who isn’t always in his study or checking his emails.

  • Nope you shouldn’t step back from clinical work. You set the bar high for everyone else and I doubt you’d be happy without meaningful patient contact. Just make sure you have the work/life balance sorted. If your wife is happy then you probably do, if not, rethink. Best wishes.

  • I´ve got a hunch that you have enough clout to have grad students running the lab while you have the final say on the design of the research. Giving up the face-to-face patient interaction is dangerous in that you would lose touch with the reason for the research. While all MSers want a cure, there are unmet needs for dealing with ameliorating the effects of MS now, pre-cure. How will you know what patients need if you don´t have patients?

  • I hope I get to meet you in January as I hear what you are saying. How do you get treated for another disease when my professionals in my area blame everything on M/S. Thank you. xx

  • As a patient with PPMS, who has had the privilege to meet you twice in 2019, I can say from my own experience that the short amount of time I have spent with you was priceless.
    I ask that while you work to evolve an acceptable work life balance, you also continue to combine direct patient contact and industry leading research.
    You have a great team around you, and you need to continue to leverage them effectively. My experience has been that you do this well already, for example the bulk of my last consultation was with one of the doctors on your team, who did a thorough job, no doubt inspired and motivated by you.
    My appointment concluded with a brief spell with yourself which I found to be very valuable.
    Please do not stop your involvement in these clinics.
    Good luck with your deliberations, and I hope you decide to continue with the right balance.
    Merry Christmas to you and all your team.

  • As someone who has been a patient of yours for 8.5 of the 11.5 years i’ve been diagnosed, I can quite honestly say that it would be a huge loss to your clinics and patients if you were to solely focus on research. I totally understand the pressures you are under though and am constantly in awe of your workload – I honestly have no idea how you get everything done every day!? There will come a time, I know, when you will have to retire and step back (I’m not expecting you to continue working forever!) but until then, I really hope that you continue to see patients because you are a shining example of what consultants should be and the difference you are making every day to patients’ lives is immeasurable!

  • If you are getting “burnt out”, which is highly likely, please drop down your clinical one-on-one interactions to just keep up your neurology skillset. If not, you are not giving the best version of you to your family, your patients, your team, MS research and mainly yourself.

    Do what makes you happy even if that makes patients feel abandoned as you will become bitter and jaded and there will be nothing left of you when you finally do decide to retire.

    Many physicians will reduce clinic time in Canada just as to keep their clinical skillset sharp. In other words, O&G will deliver 4 babies per month, radiology can only drop down to 0.5 hours, surgeons will stop doing call, GPs reduce patient numbers, etc.

    The MS world must be extremely draining to a neurologist, especially in research, with lack of funding/bureaucracy, lack of effective treatments causing worsening of patients conditions despite your best efforts. All of these are not your fault and I appreciate all you (and your team) do for MS patients in general through this blog.

  • Your are fantastic neurologist, you helped with my ms and i’m stable on tysabri for 16 years. Maybe you need more members of staff to help you. Stop using social media once you leave the office.

  • Please can we stop this lovein! Prof G’s a nice guy, a dedicated doctor etc. But he puts himself under pressure – signing up to every international conference, working for pretty much every pharma company doing work in the field of MS (see his COIs at the start of all his presentation. Seeing patients is what doctors are paid to do (fireman put out fires and policeman arrest criminals). All workers can say they are stressed and burnt out! As I said he’s a very nice man and dedicated doctor. But we also need to remember the poorvMS patient – that’s real stress and real burn out (smouldering MS). Prof G needs to manage his time better, cut out the crazy foreign jollies and devolve more. I’d also suggest he cuts back his time on social media. I always saw South Africans as a hardy lot. Perhaps Prof G needs a week in the bush with Bear Grills to toughen up a bit?

  • In my experience ms neurologists and nurses would benefit from your experiences and knowledge. I phoned my hospital for advice on pain and spasticity and was told that I was supposed to be doing my stretches. I do but I learned nothing and remain in pain. If your time was spent teaching others more of us could benefit, not just those that make it into your clinic. MS is so hard without the right help.

  • “She developed ‘MS-fatigue’, which on reflection was due to anxiety and depression and had tragically turned down a promotion at work”

    I really hope that if this woman experiences fatigue, she won’t be afraid to report it to a doctor in fear that she might be considered crazy or hysteric (the fact that she is a “she” and not “he” is a ticket to being misdiagnosed).

By Prof G

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