When talking to my dad last night, he casually mentioned in the course of our conversation (annoyingly carried out via the loudspeaker function on his new mobile phone, for some reason) that he had received some more correspondence from my neurologist. He’s a doctor himself, and he had asked to be kept informed of all developments, so it’s not that surprising that he’s been receiving correspondence. What I hadn’t expected, however, was that he would now be copied in on letters about me that I’m not even seeing myself. This one was addressed to my GP, and also copied in the MS Nurse at my local hospital:
Dear ST’s Doctor,
I am writing to let you know that the repeat MRI scan of [ST] was done. However, it could not be directly compared to the old one because that was not available at the time [note 1]. However, from my reading of serial scans, there may be a couple of small new lesions, this is again consistent with demyelination with a very mild lesion load at the moment. There is no evidence that any of these are acute as there was no enhancement with Gadolinium contrast agent. [note 2]
As mentioned in my discussion with [ST] recently, he would be a candidate for disease modifying treatment if he decides to go for it.
[note 1] The scans weren’t available at the time because the professor sent them to the clinic doing the scan so that they could use them to take shots that were directly comparable, and they promptly posted them to me with a note saying that it was not their policy to hold scans. Naturally, they didn’t arrive with me until after the scan was done.
[note 2] Really? Well what the hell were they injecting me with then?
As per usual, this is not exactly written in plain English, but the long and the short of it seems to be that my neurologist “may” have identified a couple of new lesions. They are small ones, and my lesion load may be very mild “at the moment”, but this is a significant moment: the clinical diagnosis of multiple sclerosis depends upon having more than one (i.e. multiple) demonstrable lesions (or sclerosis). The lesions must be differentiated both geographically (i.e. you can’t count any that occur in the same spot as an older one) and in time (i.e. they need to appear with a gap of at least six weeks between them). This latest MRI scan appears to have tipped me out of diagnostic limboland and into a properly, clinically demonstrable case of MS.
*blows tiny party horn*
It’s a moot point, really. My neurologist decided a few weeks ago that my condition had moved on and had effectively already diagnosed me with MS in order that I might start receiving disease modifying treatment under the NHS. All this latest news does is to remove any lingering formal clinical diagnostic grey areas that remained (although I note that the language used in the letter is not definitive, but that’s doctors for you).
I’m positive about this for a few reasons:
1) This condition is the same as the one I had in 2005, and quite probably before that. The only thing that is changing is the label used to describe it and how that new label is fast-tracking me towards some sort of medical intervention. Yes, the same label has negative connotations, and lots of people have heard of it and have pre-conceptions about what it might mean for me, but the way I feel in myself is not changing
2) I’m leaving the limboland that I have been in for the last three-and-a-half years, when I had what seemed like a transitory diagnosis of Transverse Myelitis that may (or may not) move on to become something else. I wasn’t in a hurry to be diagnosed with MS, which is after all a progressive disease, but the uncertainty was sometimes quite difficult to live with, and I’m now oddly relieved to know where I stand.
3) Given that I have MS, I should be grateful that I have been diagnosed at a point when I have very few, small lesions and I am relatively unaffected. There is no cure, true, but the treatments that I am likely to start taking are all proven to work best on cases like mine when started early, and they should help slow down the progression of the condition by something like 30-50%. This is a very good thing.
4) MS is one of the conditions covered by my Life and Critical Illness insurance policy. I can’t do a damn thing about having this condition, so that money will be, if not consolation exactly, then something of a bonus at least.
I don’t want to sound excessively stoical, but it is what it is. It amuses me that the same brain that can obsess so long and hard about ridiculous stuff like the scratches on my glasses is so readily able to let go stuff like this. It’s a control thing, I think: things I think ought to be under my control can really frustrate me, but things like this, where there’s sweet Fanny Adams I can do, I’m much better able to just accept. Go figure.
I appreciate that people are concerned about me, but really, I’m okay. I’m still the same pedantic, picky, argumentative, anti-social misery guts that I’ve always been, and I don’t anticipate that changing any time soon. This is not, and I hope will never be, a single-issue weblog as I will not be defined by this. So I’m afraid that means that you can expect lots more tedious posts on comics and music and the conversations I overhear in the swimming pool and anything else that floats across my (lesion riddled) brain around here for the foreseeable future.
Sorry about that.
The end of reddit
5 days ago
I take issue with what you've said. I have NOT shown ANY sign of concern, you moany pedantic twit. Sheesh! ;-)ReplyDelete
Seriously though, I think you've got the right attitude, I've seen people willing be labelled and 'owned' by their condition. I'd much rather know you than 'that bloke with ... ehh.. what thing does he have??'
Good on ya.
Now, I expect a proper ranty moan at something like... I dunno cricket soon!
You have the best attitude to this ever, plus what you say about the comfort of certainty is very true. And it's all just terminology, like you say. Nothing's changed other than full access to the top shelf drugs.ReplyDelete
Do write about it as much or as little as it crops up in your thoughts. But don't skimp on the running, psycho catstalker neighbours and skiwear debates either though.
I am so with you on obsessing to distraction about the small stuff, but being relatively relaxed about things that should really worry me. I definitely think it's a control thing. (That said, hats off to you for the way you're handling this.)ReplyDelete
I’m still the same pedantic, picky, argumentative, anti-social misery guts that I’ve always been, and I don’t anticipate that changing any time soon.ReplyDelete
Yay!!! (though maybe I don't know you well enough to comment on the social misery-guts -- I thought I had cornered the market on that role?!)
you can expect lots more tedious posts on comics and music and the conversations I overhear in the swimming pool and anything else
Hurrah again! and don't forget the wonderful picture accompanying holiday posts: we like them too!
I'll hand it to you, you handle things well. Certainty has an upside, right. And really, is there much that can keep you from from blessing us with your "tedious" posts? I hope not...
The not knowing IS unbearable, so at least you have that.ReplyDelete
My mom's friend has had MS for 20 and shows no signs of it. She takes nothing for it but is a vegetarian and avoids soy. She does eat eggs I think and once in a great while Salmon.