#MSCOVID19: new normal

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Will we ever get back to managing MS proactively or is this the new normal?

I saw a new patient with probable MS via video consultation this week. He was from a BAME background and I could sense that he has very active MS despite only having had two relatively mild attacks in the last 14 months; an episode of transient diplopia lasting a few days and a mild sensory relapse lasting just shy of two weeks. An MRI done two and a half years ago when he presented with optic neuritis was abnormal. At the moment he is fully functional without any physical disability apart from some persistent fatigue. 

Without being able to do a physical examination of this patient (I need to know if there are subtle motor and cerebellar signs), arrange an MRI and do a semi-urgent lumbar puncture to confirm the diagnosis and check neurofilament levels, I can’t do an accurate prognostic profile. If he has definite MS (diagnosis to be confirmed) he would only be eligible for platform therapies and ocrelizumab. But as ocrelizumab is an irreversible treatment I want to be confident of the diagnosis. In addition, I want to be able to offer this patient other options and not only one highly-effective therapy. 

What should I do? Well, I have had to tell a sort-of-a-porky and book a Gd-enhanced MRI claiming it is urgent when in reality a diagnostic/prognostic MRI for multiple sclerosis is not a neurological emergency. If this patient has to wait prerequisite 3-4 months, or possibly longer, for us to complete the diagnostic workup because of the COVID-19-induced changes to our MS service there is high likelihood of him having a catastrophic relapse and ending up disabled. ‘Time is Brain’ is how I justified asking for an urgent MRI to myself. 

Managing MS during the COVID-19 pandemic is clearly suboptimal and people with MS or possible MS are getting a raw deal. I suspect the same is happening across other specialities. I know it is happening in oncology, I saw it with my own eyes on the medical wards. 

Have you seen what is install for the NHS post-COVID-19? The following graph is from a recently launched online ‘NHS Waiting List Estimation Tool’, which shows you the backlog in terms of outpatient appointments that are waiting for the NHS post-COVID-19.  People are talking about COVID-19 burnout amongst NHS staff, it is going to be much worse post-COVID-19 when we have to try and clear the backlog created by the reconfiguration of the NHS to deal with COVID-19. 

If any of you have had bad experiences, delays in diagnosis, monitoring or treatment please let us know. I shudder to think about how much brain will be lost due to the change in the way we manage MS induced by COVID-19. I sincerely hope this does not become the new normal.

CoI: multiple

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.

31 comments

  • “I sincerely hope this does not become the new normal”
    This.
    It’s not just appointments for neurology and other specialisms that have ‘disappeared’. Actually seeing a GP is no longer possible. Any phonecall you make to any medical centre has a long answering machine message which basically tells you all about Coronavirus and not to come in but to call 111.
    While we all understand the seriousness of the virus for the population at large and also for the NHS in terms of coping, it is reaching the point where it does seem the risks for the health of the nation will be worse if we continue to focus on Coronavirus at the expense of everything else.
    Surely, we have now reached a point where appointments for other matters can be rescheduled and people can see their GP again? Can GPs and other medical staff not now be tested to determine their Coronavirus status? Perhaps those of us who have to go to medical centres often could be tested too. Ok it wouldn’t be a complete solution but at least it might allow some sort of return to the ‘old normal’.

  • Diagnosed PPMS 5 years ago my MS centre changed their minds in January this year after seeing my MRI scan. We all agreed that I should try Ocrelizumab. On waiting list as long list of people requiring infusion. In April received letter from hospital all MS staff redeployed to rest of hospital due to Covid 19. Was offered Copoxone until they can give me Ocrelizumab in the future. Have now been taking since end of April, I’m still getting worse. Now have difficulty walking with a walker. I think by the time I can have Ocrelizumab administered i will be chair bound with very little function left to preserve.

  • It’s not as if delayed diagnosis is something new. I had two relapses spaced 6 months apart (diplopia and optic neuritis) followed by a positive MRI. Then a gap of three years, then a further relapse (tingly feet/legs) that triggered a new referral to neurology, but the only neurology department NHS Choices would refer me to was one that doesn’t diagnose MS. After another relapse (diplopia again) I had that neuro appointment resulting in a “probable MS” diagnosis and a referral to Queen Square. While I waited for that appointment I had a fifth relapse – nystagmus this time. By the time I was finally diagnosed it was 4.5 years after my first relapse.

  • Also worrying is that a new pandemic of another zoonotic disease could arise any time. Whooping cough, measles, mumps and smallpox all came from other animals in history. And monkeypox is just waiting in the wings. E.g. it seems it occurs in cane rats, which have turned up as illegally imported in London.

      • Wish it was a scare story. I’d call it harsh reality. Just quoting from serious R4 documentary for one thing; I don’t do social media or tabloids. How did we get in the situation of being so badly prepared for a pandemic? By sticking heads in sand. New diseases with potential to infect humans occur all the time, many in domesticated animals.

  • Absolutely it is a sub-optimal exam if you are doing a telelink-based diagnosis. All of us feel the same way. Without any question unless a person comes along with LP results, has an MRI that has typical lesions, etc, etc and mimics have been excluded and all you do at that time is ‘bless the patient with the diagnosis’ everyone knows, including Isabel, your computer AI guru for all things diagnostic.

    • I am beginning to realise that medicine is a hands-on profession. Telemedicine can supplement the face-2-face or hands-on practice, but not replace it.

  • What would Your advice be to someone who was Concerned that had MS? Is the private sector going to be any better?

    • Not sure, but a colleague of mine told me he is doing more face-2-face consultations in his private clinic than he is doing in his NHS clinics.

      • That is scary to hear. I have a relative who has been having neurological symptoms for over a year. Having seen two neurologists privately several times and having a clear scan ( no enhancement ) she was told it was three various things by three different people – A disc, highly sensitive neurological system or unexplained sympathise due to a trauma.

        I have been watching this blog eagerly awaiting advice of what she should do once this has settled down ( she was due to see someone you kindly recommended privately prior to covid ) but I am worried now that she may be left in limbo for months to come . If you do start seeing private patients I would be keen for her to see you!

        I just don’t know where she should turn to avoid more confusion!

    • Please note I do not see private patients, but if I am made redundant post-COVID-19 as my University tries to save money I may have to start.

      • “but if I am made redundant post-COVID-19 as my University tries to save money I may have to start”

        I hope not Prof G. This goes against your principles as a card carrying socialist. I’m planning to raise money by doing 19 laps of Hyde Park in my wheelchair to raise some money for Queen Mary – I’ll make sure that the money raised is to support your post. You’ve done so much for others and we must do our bit to support you.

        • I don’t think anyone can take their jobs for granted in the current environment; it’s going to be a bloodbath across the higher education sector.

  • The social cost to children of missed education and lost childhood, the economic cost of unemployment and diminished tax receipts, and the health costs in terms of delayed diagnosis and neglect of dementia patients are monumental.

    The lockdown may have been required in the short term to manage NHS admissions and to buy time to increase capacity and procure PPE, but as a long term strategy to control infections in care homes and other vulnerable settings, it is disastrous. There are much more efficient ways to shield the elderley and the obese.

    When you think about it, closing primary schools to control an outbreak that has torn through old people’s homes is crackers.

    • Not a quick reversation. Once a cell is killed, it is dead therefore if you stop things do not go back to normal any time quickly it takes about 72 weeks for the B cells to come back and in some it is up to 175 weeks (3 and a quarter years) and that does not show the memory B cells which will be much longer than that

      • Im currently on Ocrelizumab and my understanding is that the Bcells which may cause the problem come back at 5-6 months which is why the infusion is given every 6months.. I am on a 4 year trial started 2018 for RRMS, Infusion delayed due to C19. For the past week ive been feeling leg weakness, tingling and numbness moere intensely Ive felt this is because my infusion is due..or is it psychological.

  • I remember my first face to face consultation being quite an experience. The physical examination revealed areas of sensory loss, loss of abdominal reflexes, mild intra nuclear ophthalmoplegia, and subtle balance issues I previously had no awareness of myself. These findings helped me appreciate my situation far more clearly and were an important milestone on my own relatively fortunate MS story.

    Hopefully face to face consultations will find their place again, for the benefits of doctors as well as patients. We need to keep those skills alive as well as the opportunity for human contact they offer. Im sure their need can be reduced, but never replaced.

    • Ditto as above.
      My MS nurse is very nice face to face, but comes across as confrontational and a touch defensive on the telephone – she really could do with some coaching on her phone manner.
      I am also being cowardly as I am posting this anonymously as I know she reads this blog…..😕. I think I will mention this to her next time I speak with her – face to face ofcourse.

  • No one has contacted me about my m.s. since covid arrived , and as there is a second wave on its way I doubt if I will hear from them at all , forgotten !!!

    • In the US no one ever contacts MS patients to see how they are doing. There are no specified MS nurses that know a set group of patients. Basically we´re on our own except for the two speedy check-ins each year. Our system is based on responding to crises, providing referrals for testing and PT and selecting DMTs.

  • Please help me I. Think on reflection that I have had ms for some time it has caused me to be very anxious with my gps say is wrong with me I have excruciating burning from my trunk down both legs and feet I have a headache everyday and have lost most of my sense of smell and taste and am very badly dizzy on standing am waiting for mri scan but god knows how long with covid I will probably be dead by then because. everybody keeps saying it is anxiety rich I know it is not and l am terrified and don’t know what to do please please try to help me before it is to late

    • Im not a neuro, but there a plenty of readers on the blog who didnt get a diagnosis for years and they are still around and so will you be too. If there is a neurological problem you need to be seen by a neurologist and I am sure there are some great ones in your area. They key is to get a referal from your GP so you can get in the system, but if you are waiting for an MRI then you are in the system. Things are returning to normality but obiviously things have slowed down because it takes along time to clean the scanner in between each person, if you feel thinks are getting worse speak to your doctor or NHS111. Sorry I am not much help but we can’t give medical advice anyway

  • I find myself in exactly this position, I have just come out of a major relapse in both legs up to my trunk.
    I phoned my prescribing hospital in *****, they said see your ms nurse in *******, she said nothing to do with me, ***** can help.
    I went to my gp, she said, I can’t help you, ***** prescribe your aubagio ,go see them. ***** told me, go to *******!
    So I was left unable to walk and helpless.
    Eventually I went to a&e and was given steroids, I had to tell them what I normally have as they didn’t know! Unbelievable.
    10 weeks later I received a call from my specialist saying aubagio is probably not working for you, and I am now on the list for ocrelizumab. When this will happen is anybody guess.
    To be in this position is not great and with my employer putting me in furlough, the issues that are always there with my MS, mental health problems start to come into play, anxiety is my full time partner now and how am I supposed to get help with that at this time?

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