An Open Letter to a Newly Diagnosed Patient
I’ve been a co-moderator on the MS News Today Forums for a couple of months now and recently wrote a reply to a newly diagnosed patient, Jono. He’s only had MS for a month. I found myself writing what I wished I’d known when I was diagnosed.
Now, I’m well aware that you all don’t pore over the forums, so in the spirit of cross-pollination, I thought I’d share the post here today. If you’ve read my column before, I hope I’ve built up enough goodwill that you might at least sneak a peek at the MS forums. If you’ve read me and hate me — well, you won’t have gotten this far anyway!
What follows is strictly my view. I wish I’d had the sense when I was finally diagnosed to write to someone about it. This is very much what I’d wished I’d known then.
I was 51 (am now 61). Had been hit by a sclerosis a couple of years before but it hadn’t developed into MS: unfortunately it did.
I’m British & the policy back then was to only give DMT’s (Disease Modifying Therapies) after a number of relapses (this has now changed thankfully).
Am now in a wheelchair- it seems MS is often very aggressive when it occurs later in life. Though thankfully the majority of people with MS don’t end up in a wheelchair
I’d tell my newly diagnosed self to grab a DMT as early as possible. Indeed I’d push for stem cell replacement therapy (comes with 1-2% risk of death mind). By the time I could have got it my MS had already progressed to where it would no longer work. It doesn’t fix you but it freezes you where you now are. MS is a progressive disease so grabbing what you can whilst you can is eminently preferable.
Good luck Jono – this disease is incredibly complex and new things keep popping up even when you’re something of an old lag like me.
MS is different for everybody but I’ve written a column here for 2 years (Fall Down, Get Up Again) which might give an insight of what may happen to you. It might also get me another reader! (Toot-toot)
Continuing in the vein of the forums, please tell me anything that you would add to this letter in the comments below. I’ll then add them to the correspondence to Jono in the hope that some of it helps. I know I should be encouraging you to do it yourself, but we both know that ain’t gonna happen. Sign off with your name and I’ll make sure you get a byline.
Now that will make you want to have a look.
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