How deep is remission?

Someone once said to me "MS is a companion, but not a friend."

These words ring true. I have been in remission for a while now, but I still haven't shaken most of the symptoms. The dizziness and fatigue have been pushed into the background but they grumble along, just to let me know they are still lurking away.

The tingling fingers and leg pain are still there as well, but there will be a gap of five minutes or so every now and then when my hands feel "normal", and the crushing and squeezing in my feet and calves won't start until later in the evening.

The double-vision is ever-present and consistent though, so it is this that I use, just to pinch myself that this is really happening to me. Let's just look left for a second, I tell myself... yes, two plant-pots instead of one.

Being told you have MS is so surreal that when symptoms are on a back burner and I feel good about myself, I feel the need for a reality check.

You may ask why. Why not just enjoy the moment? I think the answer is that if all my symptoms disappeared completely, I would forever be paranoid that there was a big attack just around the corner, waiting to take me by surprise. Checking that everything is still going wrong in it's usual way, ensures that I get some constancy and I have something that I have the illusion of keeping in check.

Then of course, there are the times when I forget to take my tablets for a few days and it feels like I'm holding a cactus anyway.

This weekend was a mad one: jobs to do, daughters to amuse etc. On top of all this the weather was warm and muggy and I came down with a head cold which screwed me up for long stretches of the day. There were a couple of times when I simply couldn't stand up. And as I type this, I am battling with drooping eyelids and a brain determined to shut itself down.

I guess there is no easy way to guage where remission begins and relapse ends as everything is there still - making it's presence felt. The terrorist cell that operates in my central nervous system is currently doing a woollens wash, with their balaclavas probably just starting the spin cycle.

The next move they make could be tomorrow or it could be in twenty years time.

Whenever it happens, I like to think that I will be ready psychologically.

One year on ...

Today is the first anniversary of my diagnosis (see MS History - part two).

Health professional bodycount so far.

Starting with the first GP visit last year, the bodycount is as follows

• GPs 4
• Practice Nurses 2
• MS nurse 1
• Ward nurse 1
• Occupational Health nurse 1
• Phlebotomists 6 (estimate)
• Physiotherapists 1
• Neurologists 5
• Neuro-psychologists 2
• Radiologists 4

If you consider the medication as well, I have probably cost the NHS more money over the last year than some of it's employees.

Symptom recap:

Current symptoms:

• mild optic neuritis (since Jan '09)
• doublevision / nystagmus / intra-nuclear opthalmoplegia / oscillopsia
• fatigue
• tingling / pins and needles
• neuropathic pain in legs

Symtoms that have cleared up for now:

• L'Hermitte's sign
• vertigo
• muscle weakness
• involuntary muscle movement

Of the current symptoms, the fatigue and optic neuritis aren't quite as acute as they were at first onset, so I feel much better, relatively, than I did last year. I think it is important to stress that I still have bad days, though (I nearly fell asleep in a meeting yesterday). Things are also helped by friendlier medication.

Synchronicity

I am enjoying some synchronicity with my car at the moment.

I have just had my first annual meeting with my neurologist, which was quite a positive affair.

My car has had it's first MOT - it passed.

I have been promised prism lenses to combat my double-vision.

My car has had the offside headlamp adjusted.

I have been feeling good this week - got a lot done, felt quite happy.

Car fairly zipped along the lanes on the way home in the late afternoon sun today, Sonic Youth blasting out of the stereo.

It has been a good week.

Yearly neurologist meeting - 2009

Yesterday, I saw my neurologist's registrar - Dr Somebodyorother plus one student.

I had to recap my entire MS history from Day 1 again. I always find it difficult to remember the relapses prior to diagnosis as I didn't recognise them for what they were at the time.

I did my usual set of tests. I had my reflexes tested, walk/limped from one line of old red tape stuck on the floor to another one and back while he timed me on his iphone, I walked an imaginary tightrope heel to toe, I read the eye chart, I resisted the pulling and pushing of my arms and legs, I had my eyes examined and I watched his finger move from left to right...

...my eyes were flickering...

"Do you want to come and have a look at this?" as he singled out my nystagmus to his student.

...and back again as his finger became two fingers as if he was making bunny ears behind an invisible head.

Back in the consultation room, my regular uber-neurologist breezed in with a student in tow. He flashed me a grin and told me how well I looked (see pet peeves part one) and leant against a bank of xray lightboxes with chin in hand as the registrar recounted his findings. At the mention of nystagmus, he lurched himself upright and held his biro vertically in front of my nose. I dutifully followed the pen, demonstrating my wonky eyes to the second student.

Excuse me while I digress - I have no idea if my nystagmus is a particularly textbook example or whether nystagmus cases are hard to find, but it is always singled out to the accompanying student. So if you are reading this blog and you are a neurology student (or otherwise), it will be quite easy for me to post a film of my oscillating eyes on this blog. If you would like me to do so leave a message in the comments and I will be happy to oblige.

He also noted my intranuclear opthalmoplegia, which his registrar had missed (my left eye moves a bit slower than my right).

Anyway, summarising the meeting:

• I have only had one minor relapse in the last year, so the medication (Rebif) is working and I can continue with it.
• An appointment is to be made at my local hospital, so they can try me with prismatic lensed spectacles that may correct my doublevision (no obligation to take them).
• I have regained my balance. Good old self-healing magical brain. Standing up straight with my eyes closed, I don't keel over and I can walk heel-to-toe across a room neither of which I could do a year ago.
• I need an extra blood test to see how my system is coping with the Beta Interferon

"You're doing very well" grinned my neurologist (cheerfully disregarding my mentioning pain and fatigue) before fielding a couple of my questions, shaking my hand and breezing out again.

So there you have it.

All being well, I won't see him for another year.

Neuro appointment

Off to the big city to see my neurologist tomorrow.

This will be my first annual check-up, so I am not sure what it will entail. My guess is that it will involve the usual tests to see if there has been any change since the last time I saw him plus a discussion about the medications I am taking.

I have been a bit flaky this week, with the heat - I had a bad spell of vertigo while playing with my youngest the other afternoon and I have had background dizziness since. On top of that, a few weird sensations across my body and the fatigue cranked up a few notches.

So I should appear nice and rough for him tomorrow.

Advantages of MS - part 1

Stubbed my toe this morning - the second toe on my left foot. I split it under the nail - blood everywhere.

This would normally have me hopping round the floor with tears in my eyes. Luckily it's a toe I can't feel - hooray!

World MS Day