Dear Blog Reader
I spent 15 minutes on the phone with one of my patients who has secondary progressive multiple sclerosis. She was an avid blog reader but has stopped reading the blog because she can’t stand the constant barrage of posts about COVID-19 and vaccinations and she doesn’t understand the posts anymore. I think some other readers may share her views.
This patient’s real concerns are about her MS and why she has deteriorated so much over the last 12 months. Is it neglect? Is it because she has stopped her weekly physiotherapy and pilates sessions? Is her MS active? The last time we imaged her in late 2019 there were no new lesions on her brain MRI. For your information, she was treated with off-label subcutaneous cladribine 4 years ago having failed interferon-beta and fingolimod in the past.
Has she deteriorated because of her worsening depression? She is lonely and lives alone. Prior to COVID-19, she used to work 2-3 days a week for a charity, with lots of contact with the public; this brought purpose to her life. Now she has face-time calls with her ageing parents once a day.
Is her deterioration due to her poor sleep? Her recurrent UTIs? Or is due to premature ageing?
Has she lost confidence in walking because of repeated falls? She now uses her wheelchair almost all day indoors.
I spent some time explaining to her that as soon as we can we will repeat her MRI and if she has new lesions she may become eligible for siponimod treatment. In the interim, I have referred her for screening for the MS-STAT-2, or high-dose simvastatin, trial and I sent her a link to the following blog post which tries to explain to pwMS why they are getting worse despite being NEDA or ‘inactive’.
EXPLAINING WHY YOU GET WORSE DESPITE BEING NEDA
Does this lady’s story sound familiar to you? Have you also noticed your MS worsening over the last 12 months during lockdown? In addition, are you also COVIDed-out? If yes, any recommendations on what content you want us to cover on the blog would be much appreciated?
Hang in there if you can, the storm is beginning to subside. If you are feeling low I would recommend reading or listening to Charlie Mackesy’s book, ‘The Boy, the Mole, the Fox and the Horse’; it has kept me sane over the last 12 months.
I am thinking of all of you. I know how hard it is but we will get through this together.
Thank you.
Prof G