NB: There useful links at the end of this piece, so if you can’t be bothered reading my thoughtful insights, just skip to the bottom…
There are a few reasons that I started writing this, some of which I haven’t actually got sorted in my head yet, and some are very personal. But one is because while there is a lot of information about MS out there, some of it can be incredibly baffling, with a lot of scientific terminology, some appears quite contradictory – Benign appears to be a short-lived thing, like the ‘flu’, while Primary Progress can appear very scary, yet they are both MS… While some is down right dangerous…
Before I was first diagnosed, I had been suffering from double and blurred vision; now I put this down to stress: I was working 80 hours a week plus in an incredibly high pressure position, in a role that sort of went against everything my career up until then had been about (I was working for the Dark Side in relation to Credit Hire, whereas previously I had been a Jedi working for the insurance companies). So I did what any normal person would do, when faced with an optical problem and went to the opticians…
My vision was “fine”, but there was “something else”… I was referred to the eye clinic.
My eyes were “fine”, but there was “something else”… I was referred to neurology.
There WAS a problem with my brain… Well, anyone that knows me could have told you that… I was confronted with a battery of tests: MRI’s, CT Scans, and worst of all, lumbar punctures. I was tested for brain cancer, brain tumours, all kinds of horrible, scary stuff, but I deliberately didn’t look on the internet – it was bad enough that I was being tested for all these things.
Then I got a phone call on my mobile – it was a classic Nokia 3210, the Volvo of the mobile world. I can remember it as clear as if it happened yesterday: It was gorgeous day, about this time of year and K and I had taken the dog for a walk by the Monument on Caldy Hill and it was Walton Neuro calling: All the tests had come back, and I had MS. “Thank God! Now what’s MS?”
So, I had a diagnosis, but didn’t have a clue what it was – I’d heard of ME, but not MS, and although I had an appointment to go and see a specialist, I decided to do what any normal person would do, and look on the internet.
“MS is a killer…” “MS sufferers have a life expectancy of 5-10 years…” “MS is virulent…” And there was more.
The cr*p that I found. But these were big, friendly sites that appeared much more accessible than the sites that had scientific and medical stuff on. (To be fair, the MS Society actually recognised this a couple of years ago and drastically redesigned their site – it’s second to none now: http://www.mssociety.org.uk/) It scared us sh*tless at the time (the stuff I found on the “big, friendly” sites that is).
The reason that this was brought to mind is that a friend’s sister-in-law has just received a diagnosis, and his wife has been doing everything that I did, because although they know that I have MS, they “didn’t want to intrude – especially with some of the stuff that she’d seen on the internet…” Eventually however, my friend did ask, as his wife was getting in such a state (her sister lives abroad, and she had that feeling of impotence you get when a loved one’s ill and you are too far away to do anything), so I told them what I know.
There is a reason that I emphasised the “I“: As I have mentioned before, MS is a very personal thing… The symptoms all depend on where the scarring takes place on the brain (sclerosis = scars); for instance, just because I get tremors in my arms and legs, or blurred vision, doesn’t mean that someone else will… I have a progressive, form – that doesn’t mean that my friend’s sister-in-law will have it…
So I have a suggestion to anyone that has recently been diagnosed, or knows someone with MS:
ONLY go on reputable websites… “How do I know that a site is reputable?” I’ve posted some below, which may have links to other reputable sites…
DON’T look up symptoms “just in case”… Speak to your MS nurse, consultant, or local society – in the UK, the number is 0808 800 8000,in the US 1-800-344-4867, in Australia +61 2 8484 1315 (note: This is the NSW main office as each state has its own)
DO seek advice if your body is/isn’t doing something and it doesn’t seem right… BUT only from one of the people listed above!
And finally, DO NOT use a search engine!!!
http://www.emsp.org/ (links to the various European MS Societies)