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.

pinch, punch, first of the month

This may turn into one of those posts which I start with no clear idea of the outcome. But rambling discursiveness is what you come here for, right?

As part of my drive to get STUFF SORTED OUT, I recently had an MRI scan. This is my first since the one which led to my diagnosis 10 years ago. That experience has loomed large in my head ever since - probably (definitely?) in an exaggerated format...

FOR EXAMPLE: When I think about that, the MRI is like something from 1960s Russia - a darkened room with a window onto a control room with two faceless white lab-coated technicians in it. The MRI itself is a dark, airless metal tube.

I know full well that my memory is employing an amount of artistic license...

This time, the room was filled with natural daylight - the machine itself pumped a good amount of fresh air into my face. The (bloody lovely) technicians offered me a choice of radio stations so I plumped for the Radcliffe and Maconie show on BBC 6 Music - their trademarked brand of whiffle and banter was the perfect soundtrack to what was actually a pleasant experience.

I think it helped that also waiting for an MRI was a no-more-than-three-year-old child - he didn't really know what was going on but the look of fear on his mother's face convinced me to MAN THE F**K UP. I've thought about him often since this happened.

So now I wait for my annual MS MOT which takes place next week where we'll discuss what happens next as far as Disease Modifying Therapies are concerned.

I'll be honest, I'm feeling a LOT of THE FEAR.

Are the problems with my walking (which has really degenerated a terrifying amount)...:

• Related to my age?
• Because I've not been doing any regular walking to speak of? (a correlation to the "Use It Or Lose It" argument which I've used in the past)

Or is it rather...

• Because I've transitioned into a re-diagnosis of Secondary Progressive Multiple Sclerosis?

I've started another course of Physio which has shown me that I really have no core strength at all, which would imply that I can turn it around if I want to. And after my session earlier this week, my Physio commented that I was walking better, as did my boss when I returned to work. So this all gives me some hope (and no little motivation to stay focused).

But... but... but... see my third point above.

A new symptom (Neuropathic Pain - in my case a feeling like there's burning hot ash somewhere under the skin on my back) is also cause for concern, coupled with the fact that I haven't had a relapse for 3-or-so years.

And here I was thinking this was a good thing.

Speaking of good news (which we kind-of weren't), yesterday was the first time that I was permitted to wear shorts at work. I'm always more comfortable with my legs out but as a member of the Senior Management Team (and fully paid up member of the CULTURAL ELITE), such activities are frowned upon.

But, y'know, heat intolerance and suchlike.