My name is Scarlet and I am a year 12 student who was diagnosed with MS last October. Because I am in year 12 I have been offered the opportunity to complete an EPQ (extended project qualification) which is where I choose a topic that I am interested in to complete an independent project on. As MS has recently become a very big part of my life I thought that this would be the perfect opportunity to find out more about it.
I would love to hear your stories from your diagnosis to more recent. I am especially interested in all your thoughts and experiences with MS treatment and research and how it has impacted your prognosis and lifestyles.
I would love to hear from anyone who is willing to share, this doesn't mean you need to have MS, it can just be someone you know who has it. I am still interested in your side of the story. Please also urge others you know to get into contact with me because I would love to talk/interview as many people as possible. If you would like to remain anonymous in my project that is absolutely fine, I will only use the information you give me if I have your consent.
This looks very encouraging indeed !
Panorama episode concerning this looks like it's on ...
Can You Stop My Multiple Sclerosis? Panorama will be shown on BBC One on Monday 18 January at 8.30pm.
Now, this latest perspective on a quasi-cure/recovery brings up a new perspective, following Ms Wiggle's recent post in the main CCSVI thread - http://ms-people.com/forum/index.php?s=&am...ost&p=60497.
How many of us, who have had their lifes blighted in middle age or younger, could rebuild their career to accommodate the drop in income, if your benefits were stopped?
For, my part, I'm in my mid-50s and was allowed to retire early. So I have a private pension income, supplemented by the DLA. I'm comfortable in that I can pay all the bills and my wife works.
But, if I was miraculously more mobile, less-fatigued and continent, what would I do? I suppose B&Q might take me! But, I would now want to do more, see more and probably wouldn't be able to afford it!
So, here we have a scenario, we could find ourselves in a worse financial state, due to losing years of your career/pension contributions to MS. And we would then be destined to live the rest of our lives living hand to mouth!
And, we may have spent some of our retirement reserve to pay for this treatment, to benefit yourself. And to benefit the Government, who didn't really help you in the first place!
So, whilst a cure, or a physical recovery would be welcome, what would it mean? Could we recover, or more importantly finance, our restored life?
This account from 3 MS sufferers was very true to read and I thought a good talking point, should anyone wish to discuss their thoughts and feelings further on MS and how we're looked at by others.
Its from: http://www.abc.net.au/queensland/conversat...32.htm?brisbane
You can also listen to the related audio by viewing the above page.
Living with multiple sclerosis
Last Update: Thursday, June 7, 2007. 1:47pm AEST
Multiple sclerosis creeps up on sufferers initially, affecting them with pins and needles, or extreme tiredness or balance problems, but in its extreme cases it can cause partial or complete paralysis. No-one knows what causes MS, or what brings on a relapse - even whether it's genetic or environmental. Around 15,000 Australians are living with MS, and Sarah Ross-Smith, Mike Hemmingway and Fiona Hall are three of them.
Often it's hard to tell when someone is suffering from MS. "We talk a lot about it being invisible and for a lot of us there is pressure when you're just involved in your everyday life," says Mike. "You know people can't see that you're unwell, even though you might feel absolutely shocking. People will say to you, very well-meaningly, 'You look great!' It doesn't make you feel great."
Sarah had similar experiences, until she got a walker. "[Then] the penny dropped with a whole range of people - it was suddenly like, oh yes, she really does have MS, doesn't she? And the walking stick's very useful in meetings when people aren't paying attention!" she laughs.
"I'm getting into the habit of poking young boys on buses when they don't stand up!" adds Fiona.
MS does take control of sufferers' bodies. "I sometimes feel my brain is like a television screen when it's got static," says Fiona, "or you put a metal dish into a microwave and you get that sparking...You watch your body jerk off in a direction and you think, oh, how did that happen?"
"You can't rely on your body any more," explains Sarah. "I crossed the road once and started having some weird kind of attack and I had to sit in the middle of the road."
Mike agrees. "Often it is little things. It can be as big as walking or it can be the fact that you're at home and you can't pick something up, or you drop it, or you lose a word, like ''chicken', that you know... but it's just not going to come out!"
It can be very difficult on sufferers' children. "It's hard to explain what's going on when you don't actually know yourself. They want to know why has this happened and you can't tell them that... As my kids have got older, they've become more accepting of it," says Mike.
"My son was only two when I was first diagnosed, "adds Sarah. "After a while, he quite enjoyed it because he got to ride around on the walker and thought that was great... He actually said to me, 'When I grow up and get MS I'm going to use your walker,' but we went through a period where he was concerned he was going to catch it from me, that it was a contagious disease ... He wouldn't let me put on his socks or help him dress."
Currently, scientists are no closer to finding a cure for MS. "It's not fashionable, dear," says Fiona bluntly. "With MS you can twitch and spasm and that makes people uncomfortable."
"I think also because it doesn't have a high fatality rate, it's not necessarily been a research priority," says Sarah. "It's not a disease that typically affects children so again, there's not a research priority placed on it."
Sarah Ross-Smith, Mike Hemmingway and Fiona Hall
Founded in 2004, MS People UK is a community website and discussion forum by and for people with Multiple Sclerosis as well as for friends, families, supporters and those interested in this disabling condition.
If you’re newly diagnosed or want to ask about possible first symptoms, or if you’ve had Relapse Remit, Secondary or Primary Progressive MS for some time, a welcoming group of fellow MS sufferers is here to chat with you about MS symptoms, diagnosis and treatments.
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