Please note the questions have been anonymised to prevent individuals who asked the question from being identified and the advice is meant to be generic. The answers given are the speaker’s personal opinion at the time of recording. Due to the everchanging situation, advice given at the time of recording is subject to change. The answers to the questions are not meant to replace the advice of your own medical team, but are meant to help support the wider MS community in these extraordinary times. All session and slide content are the views of the speakers, not the MS Academy.

Questions

  • 0:49 – Is it likely that I won’t be strong enough to fight off the virus with my compromised immune system?
  • 7:28 – I had steroids once (in 35 years of MS) with a stress-related pseudo-relapse last year. It’s very stressful now and I’m concerned about another episode which might need steroids. Am I right that steroids and COVID don’t get on well?
  • 9:42 – I woke up and both feet and my legs were numb. […] Is this a relapse? They did mention it was peripheral neuropathy what I can do about it, any suggestions?
  • 12:14 – How do you know when your MS starts progressing on to secondary progressive or can you permanently stay having RRMS?
  • 15:26 – I have read that COVID-19 affects A blood type people more than others. What do you think about this?
  • 17:47 – What support and/or contact is reasonable to expect from a team that has been treating me for over 20 years?
  • 21:07 – Do you know any confirmed case of an MSer positive with COVID-19? What is the treatment applied for it, how is the situation and if this had an effect on the MS progression? My neurologist mentioned that the inflammation due to COVID-19 can potentially trigger a relapse after the infection.
  • 27:05 – Does it make sense to get the flu vaccination because of the risks of this disease? Even though there are risks regarding the progression of MS?
  • 32:44 – In Germany there is a discussion about the definition of risk groups (elderly people and people with chronic disorders). If I am not taking immunosuppressive medication, is it reasonable to assign myself to this risk group or do I have the same risk as other people my age?
  • 34:52 – I have come off Ocrevus because my doctor informed me to, will I have a relapse?
  • 40:26 – How can we ensure that frontline medical and nursing staff who are managing people presenting in extremis with COVID-19 are made aware that pwMS are individuals, many of whom have a quality of life worth living, rather than a homogeneous group who are probably unlikely to survive and/or not worth the scarce ventilators?
  • 44:49 – I’ve read and been told that PwMS aren’t at particular risk of COVID-19 if they aren’t taking immunosuppressant DMDs, or have other health conditions which make them vulnerable. But now that the virus is killing healthy and young people, can we be sure that’s true?
  • 46:53 – Until we have a vaccine is the only way out for us all, or the great bulk, to get the virus and suffer whatever fates bring us and the only defence be a year or more of isolation?
  • 48:45 – How are the lists of people who are sent a text to say they are in the extreme risk category so need to self-isolate being made? Is it just the criteria on the MS Society website, or is there input from individual MS teams, or individual trusts? Some people are getting letters due to being on ocrelizumab, but others who are also on ocrelizumab are not.
  • 57:34 – Is there any further evidence around Vitamin D, a lack being contributory and/or a high dose of acting preventatively?
  • 1:02:37 – I’m currently taking fingolimod, which as you know suppresses the immune system. I have been on the medicine for 3 years now and during that time have had 3-4 chest infections a year, which needed antibiotics. I have also had shingles 4 times in the last 5 years. Should I be shielding?
  • 1:12:25 – Is or will the global pandemic have any significant impact on any new treatment pipelines?
  • 1:15:21 – Are there any new drugs or procedures coming soon that they hope will take MS treatment in any new, exciting directions?
  • 1:24:56 – Do we have any rights to staying off work when it comes to self-isolating if we are not in the ‘extreme risk’ category, but are still in the wider ‘vulnerable’ group (i.e. have MS)?

Useful links

Chairs

Prof Jeremy Hobart, Consultant Neurologist, University Hospitals Plymouth

Dr David Paling, Consultant Neurologist, Sheffield Teaching Hospitals NHS Foundation Trust

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This meeting has been sponsored by Roche Products Limited. Roche Products Limited has had no control over the educational content of this activity.

  

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