Coping with COVID-19 and MS

Editor’s Note: The National MS Society remains committed to people affected by MS and their families during this time of uncertainty. We believe that community is now more important than ever, and we will be sharing stories from across the MS community of how people are dealing with challenges related to coronavirus (COVID-19).

Find resources and information on our
Coronavirus Resources Page.
 
 
Because of COVID-19, many of us who take disease-modifying therapies for MS are stuck in a tricky situation. How cautious do we need to be? How high IS the risk? If we are due for another infusion or dose of medication, should we take it or wait a few weeks? How isolated do we need to be?

I just had my infusion (with ocrelizumab) two weeks ago, which suppressed my immune system in order to control my MS. These questions of risk are personal and real.

The sad reality is we don’t have all the answers. But most MS specialists seem to concur that many MS medications like ocrelizumab – along with alemtuzumab, cladribine, rituximab, fingolimod, dimethyl fumarate, diroximel fumarate, teriflunomide and siponimod – probably increase the risk of viral acquisition and severe illness, if infected. Taking extra precautions seems prudent, especially for those who are also over 60 and/or have heart or lung conditions. Talk with your doctor regarding modifying your treatments, and discuss other strategies to lower your risk.

As an MS Warrior, I am used to uncertainty. I don’t know when another MS flare will sneak up on me, rob me of some vital function, make just a brief visit or stick around for a prolonged stay.
I’m also used to weighing pros and cons, risks and benefits. As a family physician, I have guided many patients over the years in testing and treatment decisions, and often the course is not clear-cut. In the decade since my own diagnosis with MS, I have worked with my neurologist to choose medications and develop treatment plans. We usually agree, but not always.

Add COVID-19 to the mix, and I’m pushed in new, frustrating directions with my decision-making, particularly with social distancing.

Just today, here are some of the decisions I have had to make:
  • Can my daughter have a friend over to spend the night?
  • Should I give my husband a hug when he comes home from his shift at the hospital?
  • Since our other spring break travel plan was cancelled, can we safely go on a road trip later this week and stay at an Airbnb or with relatives?
  • Can I go biking with my parents, who are in their 70s?
  • Can I go on a walk with two friends – both physicians who could have come in contact with infectious patients?
In my city of Austin, there are just a handful of known cases of COVID-19. But we expect the virus is much more prevalent, and we can't confirm it because we haven’t been testing many people.

COVID-19 can be passed to others – usually through respiratory droplets – even by those without symptoms. Without widespread testing, we can’t tell who is infected, so we have to assume almost anyone potentially could transmit the virus.

Hence the recommendation for “social distancing” – keeping more than six feet away from others (especially if they are coughing or sneezing) and avoiding large gatherings, crowded venues, public transportation and nonessential travel. Social distancing also means limiting our contacts to just a few people and hunkering down at home.

For those of us with MS, social distancing is essential to lower our risk, though it can be difficult and downright lonely. I am trying to focus on “safe” activities that allow me to interact with others and get some air, such a taking bike rides or walks outside and connecting via text or on the phone with loved ones. Some of my neighbors are banding together to help those at high risk by grocery shopping or picking up prescriptions. We are all scared, but we will get through this difficult and uncertain time.  

Uncertainty can be infuriating, even paralyzing, but as I have with MS, I will try to let it be a teacher and guide. I may not know what this week will hold, but I can be present in this moment. I can’t control this virus, but I can try to meet each bit of news, each decision, with patience and grace.
  • Wash your hands
  • Don’t touch your face
  • Cover your cough
  • Avoid large gatherings
  • Don’t go out if you’re sick
I will follow the guidelines. I’ll keep up with the news. I’ll make sure to get enough sleep, exercise, and double down on self-care. And I will also look for silver linings, practice gratitude, and take each day as it comes.
 
 
Editor’s Note: Listen to the RealTalk MS Podcast, where host Jon Strum talks to Dr. Abby Hughes about the coronavirus (COVID-19) and what people living with multiple sclerosis should and shouldn’t be doing.
 

The National Multiple Sclerosis Society is proud to be a source of information on multiple sclerosis related topics. Unless otherwise indicated, the information provided is based on professional advice, published experience, and expert opinion. However, the information does not constitute medical or legal advice. For specific medical advice, consult a qualified physician. For specific legal advice, consult a qualified attorney.
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Lisa

Lisa Doggett

Lisa Doggett, MD, MPH is a family physician, writer, and MS Warrior (diagnosed in 2009). She lives with her husband and two daughters in Austin, Texas. Learn more about her and her journey with MS at lisadoggett.com.
 

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    4 Comments

  • Sarah Lomas   Mar 24, 2020 1:33 PM
    Great article ! I struggle with going into work, I’m currently trying to determine if I’m in a flare or relapse, I’m a widow, and I think of my kids. Although we are not supposed to be penalized for staying home - I feel like I am ?
  • Genevieve   Mar 26, 2020 5:23 PM
    I can so relate to this!
    I am a Respiratory Therapist, with MS on Ocrelizumab. My neurologist, here in Canada, pulled us, MS healthcare workers on DMTs, out of the hospital for the moment being. We have been practicing very strict social distancing here. I am about to follow up with my neurologist as per next steps to take in my particular case ( RTs are finally getting recognition!!!! yay!!!! ;) ). Keep being safe, and wash your hands!!
  • Aldarix   Mar 26, 2020 10:25 PM
    Thank you for leaving your story. I myself am scheduled for an infusion of ocrevus on Tuesday. I live in San Antonio, and every day the cases of known cases of covid are going up. I work in a lab we're covid samples are coming in the facility daily, the amount if anxiety I feel daily is immeasurable. Sticking with the basics of social distancing, hand hygiene, and self awareness of what I touch, help me get through the day. But I start to feel like I'm becoming OCD with keeping clean and constantly using hand sanitizer that my hand are starting to peel. I feel like I'm waiting to wake up , like im caught in a dream that is not ending. Reading your story makes me feel a little more normal. Thank you.
  • Avatar
    Surhill87  Mar 30, 2020 1:29 AM
    Great read!!! I wondered if I was the only one with MS looking at this virus as more threatening to me than someone like my grandmother in perfect health. I had a flare up just as cases in NM started popping up, so spending 30hrs in the emergency room was very stressful....making life harder. Then to have to go back 3 more times for Salumedrol was hard too. Taking super extra special measures...I try not to leave the house unless necessary and I dont even come close to my family outside of my home. Thankfully they are very understanding about it! I appreciate this read, and maybe it will help slow the nightmares brought on by covid19.

    Stay safe. :)