Thursday, 18 June 2009

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.

Friday, 12 June 2009


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.

Thursday, 4 June 2009

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... 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.

Tuesday, 2 June 2009

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.