meeting with my neurologist

I had my annual MS MOT earlier this week. If you're anything like me, you'll have waited all year for a precious meeting with your Neurologist so you write a list of topics and questions in advance.

And after going through them - and doing the "follow-the-tip-of-this-pen-with-your-eyes" trick - you get outside and realise that only 10-15 minutes have passed.

The good news is that the last couple of MRIs have been good - no new lesions, no sign of Progressive Multifocal Leukoencephalopathy (PML) - and he's really pleased with how things are going.

Which is great because you've spent the last few weeks in a state of insomnia-induced high-anxiety. Is this a new symptom? Is my mobility worsening? Or does MS simply continue to be a fluctuating and endlessly slippery bugger?

As I've mentioned before, by the time my infusion comes around I can really feel ready for it. And one of the things worrying me was a feeling that this pre-infusion feeling was getting longer.

When I mentioned this, my neurologist said that this was a "placebo" - I think (HOPE) this was a slip of the tongue and he meant psychosomatic. And anyway, how's YOUR Greek?

So that's cool.

Having said that, when I had my infusion a couple of days later, I felt bloody great afterwards.

This was probably helped by the fact that this infusion (my 23rd) was the quickest one yet. I was in and out in less than 90 minutes, including pre-infusion observation, magic bag o' Tysabri and post-influsion flush.

If things continue as they are (no disease activity on a disease modifying therapy I can get on with), I don't see any need for me to change my medication. Especially because the next option for me - Ocrevus - would involve me having a Lumbar Puncture, something which I've managed to avoid so far.

Even though Spinal Tap is one of my favourite films ever, I really don't fancy it.

LOLZ from the clinic
I wore my FES to my last infusion - but obviously I pulled my shorts up hastily after a trip to the bathroom.

Which resulted in me looking as though I was giving my junk an electrical charge.

extreme new treatement for MS

where does YOUR anxiety go?

Mine goes directly to my legs.

I just did a search for "anxiety legs". This is the top search result:

It is common for anxiety to cause feelings of numbness and tingling. This can occur almost anywhere on the body but is most commonly felt on the face, hands, arms, feet and legs. This is caused by the blood rushing to the most important parts of the body that can aide fight or flight.

Sounds a bit like something we all know and love, right?

And that's my anxiety obviously. But where is it coming from?

Well, I've officially finished my job for the photography festival. But the lack of work isn't even the thing that's making me anxious. As I said before, I was hoping to have a bit of a break between jobs anyway, plus I still have my FUMS podcast work.

The Fampyra tablets are having their usual plateau at present. The MS Nurses have said in the past that this is just how it goes - it works great, then it just seems to stop. So I'm currently having a fallow week (all those GCSE History lessons on crop rotation obviously went into my brain somewhere).

Plus I'm taking an extra week between Tysabri infusions this month, in order to avoid paying an extra £300 for a short summer break (school holiday price rises). So medication issues might be a thing.

More than anything else, I'm just not sleeping at the moment. I'm averaging about 4-5 hours a night, and at least once a week I'll have a night when I just don't sleep at all.

Because of all this I had to cancel my appointment at the Gait lab to check in how I'm getting on with my FES (Functional Electrical Stimulation).

Similarly, I've had to roll back a little on my plan to go swimming more regularly once I was "between jobs" again. I describe my swimming technique as being loosely-coordinated drowning-avoidance at the best of times.

Lord knows what it would be like at the moment.

Image lifted from this great old series of UK Public Information Films - stick around for the brutal ending!

mind games

My mental game has been taking a bit of a battering over the last week or so, not helped by the stifling heat in the UK.

As Cole Cuchna would say, let's Dissect!

sing me to sleep

Obviously the heat isn't helping any of us with getting to sleep. The weirdest thing is, I have been dreaming that my alarm is going off. Yes, my dreams are that interesting.

It always happens about 30 minutes before my alarm is due to go off. But that doesn't stop me taking an age to realise what has happened.

One night this happened three times.

the drugs don't [seem to] work 

No complaints about Tysabri. But it seems that Fampyra / Fampridine has plateaued again. It doesn't seem to be doing anything to help at the moment so I'll probably need to have a fallow month.

Just in time for the summer holidays. Score.

never gonna do it without the FES on

In other walking news, the FES (Functional Electrical Stimulation) seems to be doing its job quite nicely. But it currently takes me around half an hour to get the damn thing on, however.

After drawing the correct position for the electrodes on my leg with so-called permanent markers (which ALWAYS washed off), I've been trying to do it by sight and touch. Way more complicated than it sounds.

I've got another appointment with the Gait Lab next month. Remind me to ask them to explain why I can't have a tattoo of the correct position.

wii Can Work It Out

I'm going swimming when I can but on days when I don't I've dug out our old Wii Fit. There is a great range of things to do on there.

I aim to do a bit of Yoga, some exercises and end by doing a few balance games (NOTE: I'm still the king of the Penguin Slide game).

well DUH...

I could without the not-so-passive commentary from the instructors, though.

oh get knotted..

you can't put your arms around a memory

Ah Facebook. Such an odd place. I quite like the Memories feature. Even though it's usually a memory of me posting some asinine political meme or musical blathering.

But I'll be honest. This bit of musical blather almost broke me.

Longtime visitors might recognise Annabel as my late friend who I wrote about here. Still much missed.

haunted foot

This week I had an appointment for FES (Functional Electrical Stimulation) at the local Gait and Movement Laboratory. It was the STRANGEST thing!

When I recently saw my MS nurse (in order to write a piece of evidence for my PIP tribunal), she carried out a few strength and mobility tests. On that basis, she felt that FES might be worth checking out to sort out my foot drop:

Functional electrical stimulation (FES) is a treatment that applies small electrical charges to a muscle that has become paralysed or weakened, due to damage in your brain or spinal cord. The electrical charge stimulates the muscle to make its usual movement. In MS it is mostly used as a treatment for foot drop, where disruptions in the nerve pathways between the legs and brain mean the front of your foot cannot be lifted to the correct angle when walking.
From the MS Trust website

So earlier this week I went along to my appointment. And it was completely bizarre.

After they'd watched me walk for a bit (AN ASIDE: why are these types of clinic so bloody far away from the car parks??), they attached two electrodes to my left leg (long time visitors will know that my left leg has traditionally been the main cause of my walking problems).

The electrodes are attached just below the knee where they can stimulate the nerve which goes to the muscle responsible for lifting the front of the foot. The electrodes are controlled by a switch which goes in your shoe - when your foot is lifted a charge is sent to the muscle which then lifts your foot, therefore preventing foot drop!

We had to spend a little time fine-tuning the charge and the position of the electrodes. When it was on my bone and directly on the nerve it was so intense and dramatic I was worried my foot might snap off! And it was undeniably weird to see my foot wildly lurching back and to the left of its own accord.

But eventually we seemed to hit the sweet spot - although I was a little disappointed that the nurse didn't get the reference when my foot had a particularly violent twitch and I asked if she'd turned it up to eleven.

I did a little more walking and the two people assessing me could see that it was helping - at first they'd thought I might need to have a set of electrodes on each leg. But almost immediately both legs were working better (although the muscles in my left leg were knackered - I don't think they've worked properly for years!).

We all agreed that it looked pretty positive for an initial test. So now I wait for them to get me back in for more tests, more fine-tuning and a fitting.