Thursday, 9 July 2015

frustration

image from http://www.samstoybox.com/
I guess that I was expecting a bit too much from my annual MS MOT, which happened earlier this week. I've been trying to gently process my thoughts ever since.

In light of our conversation with the MS Nurse the other week, my MRI scan last month, my physio appointments, plus a visit from an occupational therapist.... I was hoping for some clear answers, a roadmap of next steps, maybe a change in medication.

But obviously we're talking about MS here - clear answers and a roadmap? Don't be silly.

First up - the Neurologist we saw was absolutely brilliant and answered our questions clearly and with great patience.

Unfortunately, he didn't have any results from my MRI, which was frustrating but can't be helped.

But without any hard evidence, he can only base his opinion on a few physical tests in his office and what we tell him has been going on. And this is where the problems begin.

My wife and I left his office with two completely opposing ideas about what we heard!

HER TAKE:
It sounds like Steve might be heading into a transitional phase between Relapsing & Remitting MS and Secondary Progressive MS - but without any evidence (which will come from the MRI) we can't know either way - everyone's MS journey is completely individual so let's hold off from making any changes to medication until we know a bit more about what's going on. It's not a done deal by any stretch of the imagination.
MY TAKE:
It sounds like Steve is heading into the transitional phase from Relapsing & Remitting MS and Secondary Progressive MS - so there's no point in making any changes to medication. It's probably a done deal but the MRI will tell us more about how F**KED you really are.

And there, distilled, is the essence of our marriage. I think we can all agree that she's a lucky lady.

So now we wait a bit more. The Neuropathic Pain I mentioned last time might ironically be the brightest spot on the horizon, at least indicating that my MS is active. What a crazy condition this is.

But more GENUINELY positive is my Physiotherapy.

It's bloody exhausting but the weekly noticeable improvements to my walking speed and stamina are really giving me the boot up my (lazy) arse which I apparently need.

1 comment:

swisslet said...

Here's what I would have heard:

"blah blah blah blah.....transitional phase from Relapsing & Remitting MS and Secondary Progressive MS..... ARGGHHH ARGHHHHHHHHHHHHHHHH! WHAT THE FUCK! WHAT THE FUCK!"

So I'm totally with you, bro.