Friday, 14 August 2009

ffffffaaaaaaaatiiiiiiiiiiiiguuuuuuueeeeeeeee...... er.. [ctrl-alt-del] Damn!.. Didn't work.

I have been reading a recent issue of ms matters (quarterly MS Society magazine). It had invited readers as part of MS Week, what they thought was the most common misconceptions around the disease - usual stuff - wheelchairs; appearing to look well etc.

One of the more common misconceptions centred around fatigue, how it is generally percieved as being a bit tired or even plain laziness.

The only way I can describe full-on MS fatigue is, imagine you are working on a computer and you want to install a new program or you are downloading several megabytes of information and you PC crashes. Everything freezes, the egg-timer doesn't look like it is ever going to be anything other than that indefinitely.

Having MS fatigue is just like that - a sudden brain-crash. Nothing works. I have been jolted 'awake' from such moments when I have realised that I have just spent a period of time (seconds? minutes?) where I have been thinking zilch, nada, nothing at all - a completely empty thought process. I just didn't seem to have the energy to think. While that's quite a scary thing to realise, it's even scarier to feel your mind sliding back into that position again only seconds later. It's like my brain has been determined to shut itself down, but without the luxury of a ctrl-alt-del.

Of course, that's the mental side of it. Physically, it's like being in a four-legged race with both legs strapped to sumo wrestlers.

Right - now I'm off on my holidays. Going to do battle with hot weather.

wheelchairs not sexy - shocker

Common complaint from people with disability is that adaptive devices - wheelchairs etc - aren't sexy. They are commonly black, grey, beige and depress the hell out of their users. Interesting letter to ms matters recently posed the question "What if James Dyson had a close relative who was disabled?"

Cool - imagine that - a wheelchair designed by Dyson!... visions of a large yellow ball swerving round corners.

Tuesday, 4 August 2009

Health talk online

Even with all the support in the world, diagnosis of a chronic illness can be a dreadfully lonely experience. While the MS Society and the MS Trust and the nurse assigned to me were all utterly wonderful when I was diagnosed, I think what I needed (need) more than anything was to connect with other people who have MS and share experience.

Ultimately, health professionals specialising in MS can give you the lowdown on the disease and tell you everything you need to know and more, but it is extremely unlikely they have the disease themselves. It is like a NASA engineer telling an astronaut what it will be like flying in space.

So it is only natural to turn to the web for advice. But it's also widely acknowledged that the web can be a wildly misleading and biased source of information (I did Health Informatics as part of my Masters degree, so trust me).

For the most part, I have connected with others so far, through YouTube, various Facebook discussion boards and blogs such as this one.

When I heard about on the BBC1 Breakfast show this morning my ears pricked up. This is a new resource primarily for people diagnosed with chronic illness.

The idea behind it is that you can access interviews from other people with the same condition as you or your loved one and hear their experiences of diagnosis and living with the conditions. The patients interviewed are a representative sample from across the UK and the site is managed by experts from Oxford University.

"Sounds interesting," I thought "must remember to check it out later."

The BBC feature has obviously increased traffic to the site crashing it's servers as it was unavailable for much of this morning, but I have just accessed the site and I can report that there is NO information on MS. Clicking on "nerves and brain" brings up dementia, epilepsy, motor neurone disease, parkinson's disease and stroke, yet there is no information on the UK's most common neurological condition. Even clicking on "living with disability" only brings up
information on autism.

The only relevant info is on chronic pain where apparently one of the interviewees has MS.

I know, I know... early days... give it time...

...but it's very disappointing.

MS Trust open door

open door is the quarterly newsletter from the MS Trust. It largely reports on research results and the like, but despite this, is very readable. The current issue (just arrived) deals with posture, depression, misleading stem cell treatments and the impact of progressive MS on family life amongst other things.

Items that caught my eye:

Prevalence of MS in the UK may be as great as 100,000 people, not 85,000 as previously thought. The figure was arrived at after studying codes indicating an

MS diagnosis from GP records. Considering the fact that I consulted my GPs with vertigo and optic neuritis symptoms in the four years leading up to diagnosis, without mention of MS, this rings true.

Oral treatments for relapsing/remitting MS take a step closer with the National Institute for Clinical Excellence (NICE) announcing that fingolimod and cladribine will be included in their next round of appraisals. Both of these drugs have shown positive results in trials so far, but some safety issues need further research. I don't think I need to say that I would welcome disease modifying therapy in tablet form, do I? The thrice weekly ritual of warming up syringes and choosing injection sites is a real bind. I don't know what side-effects are associated with these drugs.

MS patients sweat markedly less than people without MS. I would guess that this isn't the case with all people with MS, just as not everyone has the same line-up of symptoms. Heat aggravates MS symptoms, so I also guess that a sweating impairment could begin a vicious circle of overheating.

If you are living in the UK, you can sign up to receive open door on the MS Trust website:

Monday, 3 August 2009


Currently experiencing a lot of neuropathic pain in my feet and legs. It can't be due to forgetting the tablets too often as I have remembered to take them the last few days.

I am going to continue to take them at the current level for this week and if no better, I'm upping the dose.

Walking about relieves it a little, but the pain always seems to catch up.

The eyes (will) have it

I have been waiting for two months for the letter deferring me to my local hospital eye dept. (I need glasses to correct my doublevision). I chased my neurologist up over the phone today.

My Uber-Neurologist's secretary apologised on behalf of the consultant (previously referred to as Dr Somebodyorother) who saw me, explaining that they had a reputation for being "a bit slow."

What a strange thing to admit...

...but actually quite a breath of fresh air.

My case notes are going to be passed onto my neurologist proper (Dr Sh) who should be requesting an appointment be made via my GP.

It all sounds very convoluted but at least things seem to be on the move.


It has been amended since, but I once laughed at a section in the MS Society publication "What is MS?" which described potential problems when drinking alcohol.*

The problems highlighted included balance, bladder control, slurred speech and double-vision.

"So how do I know when I'm getting drunk then?" I thought.

Last week I had a few pints of lager at a wedding reception. I see two objects when my eyes look left anyway, but I found it difficult to straighten my vision out coming back to centre.

I guess this contributed to my drunken state, because it made everything swim earlier than it was meant to. A most unpleasant sensation and one that made me feel a bit maudlin for a while.

The boundary between sober and drunk is now very ('scuse the pun..) blurred.

* The publication has since been amended to say that MS symptoms can become more acute when drunk.