Most importantly, you can find somebody, somewhere who will have already written about any symptom in order to back up ANY half-baked theory you might come across in the course of your day!
I've stopped having Cow's milk in my cereal, shifting to a Soya alternative (quite nice actually) after reading various things about a link between MS and Lactose Intolerance. But the thing that finally convinced me? Well, that was finding a web page (which I can't find now!) which said that the cheese-making process actually removed the lactose - so I can still eat cheese! Result!
I do actually feel quite a bit better, it has to be said - much less slovenly and my memory (for work stuff) seems to be better (still SHIT at home, mind) - but that could be due to any number of reasons:
- I genuinely love the autumn - Jumpers! Comfort food! Bright crisp mornings! Cardigans!!
- I've recently doubled my Vitamin D3 intake to 2,000 IU.
- I've walked into work for the first time in AGES on a couple of occasions in the last week - it was lovely (see first reason above).
I even recently picked up this article about Bacteria in soil having a link with MS - bizarre and I DID eat soil as a child...
When I go home to talk about this stuff, my wife just rolls her eyes - "oh, what have they decided this week?"
And it DOES seem that there's always something new which is put forward as a theory - hopefully something which can make you feel quilty - "are YOU eating enough LIVER? Tut-tut"
Call me a wet liberal but I like to think we should, as a species, be moving beyond the idea of OFFAL as a food choice. I know it's supposed to have loads of good stuff in it but when you think about what a liver actually does... just *ick*.I always come back to when I was first diagnosed, when the neurologist who called it what it was told us to stay clear of the Internet.
There are some totally valid sources of information - MS Trust, MS Society, Shift.MS - but even here there are open forums where people can sound off about their individual symptoms and have a good old moan (a long-standing pet peeve of mine) - and even play DISABILITY ONEUPMANSHIP BINGO. Brilliant!
But my absolute favourite thing about the Internet is currently Twitter - I can't even put into words what I love about it, but in the last few months I've had many chats with people - some newly diagnosed, some old-timers - not to be the "Big I Am" but just going back to my idealistic view of solidarity and LOOKING OUT FOR EACH OTHER.
(I still hate the #MSsucks hashtag, however...)
Anyway, I organise my feeds into two lists - the full list of those that I follow, including musicians and hopefully amusing celebrities, and one called Real People - these are people who I interact with regularly or have even *gasps* met in the Real World.
One of those Real People is Abigail Budd and earlier today she posted a link to another new study which says that "measuring the walking speed of multiple sclerosis patients can help doctors assess progression of the disease and the severity of disability". It then goes on to give an idea of what level of disability can be expected based on walking speed.
I flipped out (mildly - I am at work, after all) - how is that study useful to someone who has been recently diagnosed, or even to someone who has been diagnosed for years? As Abigail said to me, it's not offering much in the way of hope or disease treatments.
It's effectively just giving a new yardstick to measure how difficult your life is / is going to be. I have visions of people with MS walking around with stopwatches. And what's going to happen if they can't manage the desired time on that particular day?
Are we so out of ideas that we're each going to turn into our own personal ATOS? The current UK government would probably call that an "empowering decentralisation" or something.
As is so often the case, I don't really know where I'm going with this (and I am hungry) - but we need to be careful about what we choose to believe (obviously).
Just like me with the thing I found about Antihistamines or my ridiculous Lactose rule - if it had meant cutting out cheese, I'd never have even considered it (wish I could find that website, though...).
My problem is that I'm a very gullible cynic - I try to take everything with a pinch of salt but like my canine friend says...
[edit: see my follow-up to this post, corrections and clarifications]