Friday 15 May 2015

down the rabbit hole

So it's probably two weeks or so since me and Mrs. D went to see the lovely MS Nurse Team at the Queen's Medical Centre in Nottingham.

While we were waiting outside we read through a booklet which was about the type of treatments which are available on the NHS - worryingly they were all injection-based, so all just variations on a theme.

Like I mentioned before, the reason for seeing them was because I'd been noticing that the side-effects of my Rebif injections were getting more and more debilitating - plus they seemed to be lasting forever.

With injections on Monday, Wednesday, Thursday, I would be good on Sunday if I was very lucky.

But in my annual meeting with the Neurologist last March, we talked all this through and he said that Rebif was still a first-line treatment.

When we got in, we explained all this to the MS Nurse, who said that the booklet we were looking at was really out of date - they don't tend to prescribe many injection-based treatments, preferring to get people started on oral therapies (the first choice of many patients too, I'm sure!).

She also mentioned the fact that people on some beta interferon injections can sometimes start to produce neutralising antibodies - so reduce the effectiveness of these drugs. So this might be a reason why my side-effects were getting more intense.

This particular nurse (Maxine) always seems to have a tote bag with her which is full of booklets for different therapies, and she did not disappoint this time - see the image on this previous post.

(The MS Trust booklet is particularly good)

We talked the options through, explained our concerns and my side-effects, and were particularly interested in Tecfidera (dimethyl fumarate), which has been shown to reduce replaces by up to FIFTY PERCENT - beating the "by about a third" which gets bandied about for the more old-skool injection therapies. I've since confirmed with the MS team that this is where I want to go, so the wheels are now in motion.

The other thing we talked about was my ongoing problems walking and the drug Fampyra (called Ampyra in the US), which we mentioned as an outside possibility - Maxine is a real force of nature and said that she didn't see why I couldn't go on this too.

By this point we were both in tears - the last few months have been really hard and not-a-little worrying for us but now we were in a position to make some changes for the better. Normally I would have just waited for my until my annual Neuro appointment (which is in July)!

Maxine vowed to talk the Neuro I'll be seeing, and to arrange another MRI for me - I haven't had one since the MRI which led to my initial diagnosis and we need to check my lesions, especially because I've recently been experiencing a bit of new-ish Neuropathic Pain (mostly intense burning beneath the skin).

When I said that I found my previous MRI experience traumatic (to say the least), she admitted that she did too and suggested that I get sedated for my next one (date TBC).

So a really positive experience - and now I wait to hear from them about when I can (hopefully) get off Rebif.

GOD SAVE THE NHS - in light of the recent election, I've just written to my new MP from the website.

Tuesday 5 May 2015

a prime location

Way back when I was first diagnosed, we asked the first neurologist we saw if he thought there was anything to gain by visiting one of the local support groups. His response?

"I'd only go along if you want to get really depressed."

His logic was that, as a new member of the 'club' — and one who was displaying relatively few external symptoms at the time — the other people at these meetings were likely to be in a worse state than me. So not entirely helpful for a new recruit, and so we decided to give it a miss.

However, in my recent drive to take MS by the scruff of its neck I decided to "feel the fear and do it anyway".

An aside: the centre - also known as Lilian Prime House - has an imposing frontage (see image) and before the advent of Google Street View was nigh-on impossible to find - for me, anyway!

The Derby MS Centre has a programme of activities and also hosts monthly open days, and I went along to one the other week.

The centre staff were all lovely and welcoming (and once inside the building it certainly feels less utilitarian). And the people who were attending were… well, weirdly similar to me. For a start they were all male — one of them even had the same walking stick!

Aside from that the only other attendees were the wife and daughter of a man diagnosed with MS 10-or-so years ago who refused to discuss the matter (he was conspicuous in his absence). I know everyone deals with their stuff differently — and I'm not pretending that I've got all this shit sorted by any stretch of the imagination — but it was pretty heartbreaking to see the effect that shutting them out was having on his wife in particular.

I didn't have time to stay for a Chair Yoga demo so I went along to this last week — and it was pretty hardcore! I know I shouldn't have been surprised.

I was okay as far as the upper body stuff was concerned but when we moved onto legs and feet, it was a sobering reminder of how weak my left leg is.
I was the only guy there, and the particularly sparky lady next to me said that she was glad I'd come along as "if there's one thing I can't abide it's a roomful of women".

I'd planned that this was going to be a weekly thing but the sessions only take place during the day. And on that particular day, my lunch hour ended up being more like two hours in all, so it's not really something I can do if I want to keep my job. Plus I had to work extra at the end of the day to make up for it - which was pretty tiring!

The other people there were older, and were either wheelchair users or moved with walkers. Most of them were brought along by carers, so I can fairly-confidently assume that I was the only one who was going back to work afterwards. 

On top of this, Lilian Prime House is open Monday, Wednesday and Thursday, between the hours of 10 am and 4pm.

Thinking about this later I couldn't help remembering the MS Society estimate I mentioned a while back — that only "between 23 and 32 per cent of people with MS are in employment".

What the hell do the rest of us do?