Last reply 3 months ago
Has anyone had COVID-19 (yet?)

I’d like to hear first or at most second hand an account of what it’s like for a PwMS to go through COVID.

I’m surprised and a bit concerned that I’ve not seen one here yet. Either we’re very good at shielding, or we tend to die of COVID, or both. Or it’s just a quirk of stats, and the rate of infection is still low enough that a medium to small sized community, particularly if self selecting for protection, wouldn’t have at least one sample.

After all in all my (admittedly small) social network only know two people who’ve been affected. As in affected with symptoms distinct enough to be clear it’s the coronavirus, of course. That might be another factor.

But maybe there is such a person here? Any first or second hand knowledge of having MS and getting the coronavirus?

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3 months ago

Hi Will,
I have had a suspected case of coronavirus. I was wanting to share my story on here but was waiting, as it’s been such a hard time for me recently. Please look out for my post in the next few days so I can detail everything that has happed in the past 2 months.

3 months ago

Hi Will, yes I think I have, but not confirmed, lost sense of smell, more tired than usual, very slight breathlessness. Not a big deal, I have been much more ill than that, for example when I had my LP done. I had just come back from Northern Italy the week before lockdown, I do remember being stuck in a small cable car with a coughing woman whilst there, did n’t worry too much at the time as that was before anyony realised that it was in the Dolomites. We also flew home VIA Venice believe it or not! I am on Tecfidera though, so can’t reasure anyone on anything stronger. I am 50, so not a spring chicken, not overweight

3 months ago

If you’re looking for an account of someone with MS who got COVID-19 I’d suggest taking a read of Mark’s blog if you haven’t already:

3 months ago

Over a month ago @dominics was keeping us up to speed as Covid-19 was heading to his area and he published daily briefings and had interviews with some experts as well. You can search for his posts and learn much. I know I did.

There was also a website for everyone to log into that had been diagnosed to track the severity and their treatment, etc. I don’t remember the name of that or if the data is available that was gathered…but as it is still likely being gathered it may be a bit too soon. I know that I saw articles and discussions like this:

The impact/risk will be different depending on your overall health, location, DMT choice, etc etc. I don’t know if you watch the You Tube Dr Boster videos but he has put out several on the topic as well as the Barts Group and others. Lots of good info out there:

The link posted by @armyshift of Mark’s blog was great as well. I am convinced that if I contracted (and low chance as I really am playing it safe) I would do better than the average person as my immune system is insanely strong (so bored it attacked itself!) and being on Ocrevus with my B cells depleted my risk of the auto-immune complications are reduced as well.

Hopefully this gives you better information and some reassurance. I’m looking forward to watching for more responses if there have been cases that people just haven’t brought up yet at this point-

3 months ago

@itsmewithms Thank you for your summary. I’m well aware of all the information – this is not what I’m after. I’m looking for first hand personal accounts.

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