Friday, 30 January 2009

Health Professional Body-count

With my long-awaited referral to a neuropsychologist finally coming through and my work leave sheet bursting with hospital and GP appointments, I thought it might be amusing to tot up the number of health professionals I have met regarding my MS since last summer.
  • Phlebotomists - 5
  • Neurologists - 4
  • General Practitioners - 4
  • Radiologists - 4
  • Practice Nurses - 2
  • Ward Nurses - 1
  • MS Nurses - 1
  • Physiotherapists - 1
  • Neuropsychologists - 1
  • Occupational Health Nurse - 1
So without including pharmacists, medical students, drug company staff, couriers, receptionists, admin staff, haematologists and other backroom staff - a grand total of 24 healthcare professionals have been involved in caring for my MS face-to-face to date.

Thursday, 15 January 2009

My MS History - Part Four

For the story so far see My MS History... Part One, Part Two and Part Three

I had a job interview in two days time. With a rare evening free of brain fog, I was sitting at home preparing a presentation for it. My wife, unable to take the wait, had earlier phoned my neurologist, Dr G, to press him for the results of my MRI. As I was staring at the Powerpoint notes he phoned me back.

"I have the results of your MRI scan... It shows some inflammation in the white matter of your brain and spinal cord..."

Here comes the bit where they let you break the news to yourself:

"When you saw my colleague Dr S, did she give you any indication what it might be?"

"Yes, she said there was the possibility that it could be MS."

Quick as a flash: "Yes! It certainly looks that way."

"Oh! - OK!"

So there you had it. It was MS. Dr G - not an MS specialist by his own admission - thought it was nothing to worry unduly about. He told me that there were "only eight to ten large lesions" (only??) visible in the scan and more in the way of tiny insignificant ones. I now know that one lesion in a crucial spot can be more debilitating than several lesions spread all over the place.This, he thought, looked like a case of benign MS and that I would be very unlucky if I didn't go into remission and then get no further flare ups for years. Indeed some people can go for 20 years without a relapse, he told me.

He didn't think it worth me coming to see him at the appointed time the following week, but then conceded that I might have "some questions." So the appointment remained.

I took the rest of the evening off from job interview preparations.

The following day at work, I broke the news to my workmates.

I had no quandary telling them as I had good working relations with virtually everyone. I have since found that talking about MS can sometimes be the best therapy. It can be an invisible illness, so a bit of awareness raising doesn't go amiss, sometimes. I figured that it was probably better to be open about any problems I might be having in case I had a bad day, like the day where I had all but fallen asleep at my desk.

Everyone was very understanding and asked intelligent questions. All except my boss who pronounced that she knew someone with MS and that even when he lost the ability to walk it hadn't changed his life much because (to the whole office, rather than me) "they got him a little buggy!"

I made a mental note that should I get a little buggy of my own, she would top a hit list of people I wanted to hunt down and run over.

I met Dr G a week later. I won't go into the details of the meeting, except to say that he was uninterested and unengaged. The information he gave me was wrong. Things that I suggested were symptomatic of MS, like my optic neuritis four years previously, he disagreed with. He sent me and my GP a strange letter where he obviously hadn't listened to a word I had said and pronounced that my symptoms were getting better and clearing up, which was new to me. It all left me feeling very angry and very frustrated, on top of feeling crap anyway.

Dr G did three things for me: he prescribed steroids to relieve the symptoms (see Life with MS - part two(?)), he referred me to an MS specialist - Dr Sh - and most importantly, he made me determined to do my research, become an expert in my own MS and to build up a history so that I could make my case for treatment.

The criteria for getting disease modifying drugs in the UK is that you need to have two relapses within two years before they will prescribe anything. All the research says that the earlier you can get on the drugs, the better the long-term outlook.

part 5 >

Relapse spotting

Well, I guess this goes to show how difficult it can be to spot a relapse, sometimes.

I spoke to H (my nurse) today about the optic neuritis and heavy legs that I have been experiencing over the last few days. She thought the optic neuritis sounded like I was experiencing a small relapse, but the heavy legs and the 'cactus gloves' I am wearing may be related to coming off Gabapentin.

I am to "take it easy and see how I get on"

I thought I would make a list of things that had flared up over the last month or so:
  • optic neuritis - lights in my vision (currently) and pain when moving my eyes (last Friday to Sunday)
  • stiff heavy legs - currently finding it difficult to walk (up hills especially)
  • foot switching itself on and off repeatedly - hot then normal then hot etc. (before Christmas)
  • the same foot going excessively cold
  • occasional tinnitus - right ear (since early December)
  • dizziness - no vertigo head rush, yet, but I lost my balance a couple of times today and either bumped into things or nearly fell over
  • my head has gone tingly a couple of times
  • I felt very lethargic on a number of occasions since the New Year, but nothing I would class as chronic fatigue
  • an increase in the amount of insects who seem to want to escape from my feet

I can go to hospital to be checked over and prescribed more steroids if I need them. I don't really want to do that, though. H also advised that I take some time off if I feel any more crap than I do now, and I don't really see that happening either.

Strangely, as I typed this, I experienced a tightness across my chest that may or may not be the "MS hug."

Sunday, 11 January 2009


I'm a bit worried I might be starting to relapse again. My optic neuritis seems to have returned in my left eye - I have been having speckled lights in my vision and pain when looking round. So far, only one large white phosphene. The other day my head went tingly as I drove home from work and I've had the hot cold feet and quite a severe flare up of leg pain (the ants / woodlice trying to get out).

If it's still a concern on Monday, I will phone my nurse and ask her advice, though the optic neuritis doesn't (so far) seem as bad as 2004.

Monday, 5 January 2009

My MS History - Part Three

For the story so far see My MS History - Part One and Part Two

I was now on the books of a consultant neurologist - Dr G.

After re-capping my symptoms with one of his grim-faced registrars - Dr S - I spent 45 minutes undergoing the usual tests. I did my trick of not being able to walk heel to toe with my eyes closed, I watched a pen travel in front of my face from left to right and back again, I had the soles of my feet tickled, and the tops pricked with a pin, my reflexes were tapped with a hammer, I had to read an eye chart, walk a distance in a straight line, remember a phrase, say what day of the week it was, resist having my arms lifted and pushed against... all sorts of tests to ascertain what was wrong with me and how serious it was.

Only when I returned to Dr S's office, did I voice my fears.

I was fixed with a stern look: "It's not a brain tumour. Don't worry."

Instant relief... Phew!

Apparently there were a number of reflections on the CT Scan which might, just might possibly be inflammation caused by MS... Maybe... and if it was MS, which it might not be, to remember that a lot of people with MS lead long fulfilling blah.. blah.. blah..


Is that all!

I can deal with MS!

Hang on though, who do I know with MS?...

"Ermm... my old neighbour had MS, and she was a bit crazy, like talking to a little girl. No short term memory at all. Kept repeating herself..."

"blah blah... advances in treatment... every case is different... blah blah..."

It's not a tumour then - I can deal with MS.

The upshot of the meeting was that further tests needed to be done before anything could be confirmed, starting with an MRI scan.

A couple of weeks later, I found myself in the MRI suite of the hospital, with all metallic objects removed and a new pair of Primark trakkie bottoms on (with the metal eyelets cut out of them) that I haven't worn since. It being Sheffield, a number of pieces of paper were blu-tacked to the wall warning ex-steel workers of the damage that might be done to them with a large electro-magnet and the accumulation of metallic dust in their systems.

The very amiable MRI bloke asked me if I wanted some music while being scanned: "Rolling Stones or Beach Boys?"

"Er, Beach Boys please."

So there I was awaiting polarisation with headphones some padding and a metal cage wrapping my head so close it made contact with my nose.

"OK - this first scan will take two minutes, don't worry about the noise, if you are uncomfortable or anxious at all press the buzzer"



Lying perfectly still, afraid to swallow in case it mucked up the scans, I spent an hour in a noisy white tube, a little claustrophobic, but OK because I could press a buzzer and I could occasionally exchange comments with the radiologist. All this, while the intricate inner workings of my head revealed themselves on a computer screen just beyond the window of the adjacent room.

part 4 >

So long Gabapentin!

With the backing of my GP, I have ditched Gabapentin.

It has been making me feel crap for a while, now. The main side effects being fatigue and hallucinations. I was starting to fall asleep by 7pm every day. As an experiment, I tried a couple of days over Christmas without taking the pills and I instantly felt better. I took my last pill three days ago and my wife has since remarked that I look a lot better and I am chirpier in the mornings.

It seems to me that while G didn't rid me of symptoms completely, it must have had some dampening effect. My hands, feet and leg feel three times as bad as they did a week ago, and my calves and feet were excruciatingly crawly last night but - you know what? I'd rather have that than the side-effects.

Now I can be more in tune with how my body is feeling, particularly as a lot of G's side-effects mirror (and mask) general MS symptoms anyway.

Friday, 2 January 2009

My MS History - Part Two

See Part One for the story so far

It was a brain tumour - it had to be. How else could it be explained? The GP said no heavy lifting, so maybe there was an outside chance of it being an enlarged blood vessel, ready to haemorrhage at any second.

Everyone has something they are frightened of. Something so unimaginably horrific they never want to confront the possibility of it ever happening. For me, it has always been either the unlikely scenario of being trapped in an enclosed space deep underground, or an inoperable brain tumour, growing insidiously and without mercy deep within the white matter. I had lost my mother to cancer just two years previously, so I was well aware of how quickly it could escalate.

OK, so tumour or blood vessel.... something to think about as I lugged the heavy suitcases and baby paraphenalia into the car for our Cornish holiday. People were being positive, telling me it might be a trapped nerve, but how could it be a trapped nerve if it was affecting both my eyesight and my hands and feet? What if the vertigo I had over the last few years was something to do with it, as well?

I had a look in the Family Health Encyclopedia... Hmmm... Brain... Disorders of the brain... Brain tumour...

Possible symptoms...
Headaches - I had a headache yesterday, so check!...
Doublevision - Check!...
Sensory impairment - Check!...
Balance problems - Check!...
Memory problems - yeah, I've been a bit forgetful lately, so check!

Let's cut to the chase...

Life expectancy, six months!...


I asked my wife to make sure that she took plenty of photographs of me and the kids over the coming week. She rightly replied with the advice to get a grip and until we knew what it was it could be anything.

As an eternal optimist, I wasn't completely convinced that this was my last ever holiday with my family, but the possibility did weigh heavily on my mind. Despite this, it didn't ruin the week. Every morning I checked to see if the doublevision was still there and it was. I pressed my fingers together to see if they felt pins and needly still and they did. I watched my calf muscles roll around and twitch under their own steam. But the fact I had other stuff to think about and plan for and had places to go occupied my mind somewhat.

When I came home and found a letter from the hospital, booking me in for a CT Scan the previous week, everything came crashing back. A sleepless night followed and continuing the line of reasoning that I needed to keep busy to stave everything off - I headed to work.

A colleague asked if I'd had a good holiday.

I burst into tears.

On the end of the phone, the hospital asked if I could come in for the scan that very morning. When the NHS moves fast, you know it's serious. I made the 20 mile trip from work, getting changed and picking up my wife on the way.

Up in the CT Scanner ("Like sticking your head in a washing machine") I screwed up my eyes, trying not to think about the rays entering my skull and unlocking the horrors within. I also avoided the picture of cherry blossom on the ceiling of the scan room, strategically placed to calm the nerves.

Afterwards, I phoned my regular GP - Dr N - and he took the time to reassure me that it could indeed be anything, not just the worst-case scenario, and I could have something to help me sleep if I needed it.

This was the Monday, I had a follow up appointment on the Friday. In the meantime, I told myself that they would rush me in sooner if it was life threatening and that no news was good news...

part 3 >