3 months, and a secret fear.
Tomorrow marks three months since I last used IV cortisone. This is not quite the cause for celebration that you might expect, because I am having another relapse. All too familiar feeling.
It’s been coming on for about three weeks already, maybe more. What I drew out of the lucky packet this time is: optic neuritis (my old nemesis), numb feet and loss of co-ordination in hands.
None of the symptoms are particularly aggressive, but are nontheless insiduous, especially the ON. I am experiencing a disconcerting loss of vision, accompanied by stabbing pains behind my eyeballs. That is what I woke up to this morning.
Phoned my GP (the one that said if I was single he’d take me out on a date, even though I have MS, hehe) and asked him to arrange for me to go to hospital. He said that he’d try but that he didn’t think there’d be room at the inn. Apparently the hospital is chock and block. I swear, the heat is as bad as the cold for making people ill.
So I may go tomorrow, if a bed becomes available. I’m not in a tearing hurry, so a couple more days won’t make a difference. Not a pleasant thing to do. I’d prefer to get it over with. As usual, there are a lot of things to worry about regarding the whole sorry thing, but I’ve learnt through bitter experience not to prolong it too much. At least this way I should be okay over Christmas and my birthday. That would be a welcome change.
My secret fear? Well, I get the impression that I am not having relapse per se. Not the way most people with MS have them, on average once a year. I think the cortisone suppresses my immune to give me a three month break, but that as soon as my immune system builds up again, the relapse automatically picks up where it left off.
What concerns me about this, is the worry that I may have switched to secondary progressive MS instead of Relapsing-Remitting (which definitely counts as from bad to worse).
I know I have experienced wondrous improvement, but that has been steady since 2006 when I started taking cortisone IV’s every month, or every second month.
I don’t know for how long a person can safely do this before picking up some very nasty adverse effects.
I know I am being a pain-in-the-ass worry-wart. What can I do to change it if it is so, and why waste my time worrying about it in the interim?
I am waiting with baited breath to go onto the open-label phase of the trials, and the 1.25mg dosage. I am so hoping that it will either extend the time between relapses, or better yet, bannish them totally.
Of course, that brings with it its own set of worries. It is risky being on immuno-suppressant drugs long-term. For how many years will I feasibly be able to stay on this drug? At least two people have already succumbed to the dreaded PML. That is a bit of a sword’s edge to live on.
Maybe I should just go to sleep and forget about all these things that I have absolutely sweet-diddly control over.
As it says in the Bible, “Who of you by worrying can add a single hour to your life?”