Website MSM2

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Website MSM2

Postby Lewis2e » Fri Aug 13, 2010 2:30 am

Hi Everyone

Long time lurker, first time poster.

This is something which I posted over at the MS Society UK forums. Its had quite a good response so I thought I would post it here too. Apologies if you have now seen it twice.

I am interested in finding out what people with MS have in common. After being diagnosed with MS one of the first questions that hit me was “well...why me?”. As most of you probably already know, MS is believed to be caused partly by your genes but partly by “environmental causes”. No one really knows what these environmental causes are (though there is speculation it could be a few things – like vitamin D for example). I see discussions pop up on the forums now and again where people discuss peculiar things that we seem to have in common. I think that it would be at least “interesting” to know what these things are (knowledge is power!) and at most it might help work out what things make MS worse and how to avoid them (but I know that’s incredibly optimistic!).

I’ve put a website up where people with MS can vote on things they have in common (also people without MS for a comparison). You can find the link in my profile.

If you have some free time please stop by and vote on things, or ideally see if you can add more. Its just an experiment so I don’t know how useful it will be or if anyone will be interested in the slightest, but I hope people are and I thought it was worth a shot. There was quite a bit of interest from people on the MS Society UK forums. If no one cares and it flops I promise never to mention it again!

How useful the whole thing turns out to be depends on repeat visits so if you are interested remember to come back! Or ideally sign up for the weekly email alert so you get an email (on a Friday morning) letting you know there is new stuff to vote on that week.

More info in my profile or on the site itself, and as always feedback is more than welcome.

Thanks for your time

Lewis
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Postby AlmostClever » Fri Aug 13, 2010 4:20 am

http://msm2.toohey.co.uk

Here's Lewis' link for the really lazies!

Sounds interesting...
If you can't explain it simply, you don't understand it well enough. - Al Einstein
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Postby Mirry » Fri Aug 13, 2010 6:20 am

Good morning Lewis

I was tenatively diagnosed back in the UK when I was 24, all the tests came back inconclusive. Now I have just turned 40, my Dr's here in the US have confirmed I have it. Still waiting for further tests to establish at what stage etc, but so far I have none of the symptoms that others here seem to have and don't seem to have the relapses either and for that I am thankful.

There are so many things I miss about the UK especially my family, it's hard being here without them especially now, but there are some realyl great people on this site too which is making this a whole lot easier to deal with.

I couldnt get onto your site from the base computers, but I will certainly check it out when I get home. Oh and please send some rain my way :D

Mirry
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Postby 1hunter » Fri Aug 13, 2010 6:29 am

Mirry,
what symptoms do you have?
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Postby Mirry » Fri Aug 13, 2010 6:32 am

Good morning Hunter

I dont have any.... I went to the Dr's about my migraines I had been getting since childhood. He decided to be thorough and send me for an MRI. I was then told I had MS. My neuro said migraines have nothing to do with MS. So I am still not sure what is causing them.

So if I hadn't of been on a mission to finally get an answer about my migraines, I wouldnt of known I had MS for sure.

Funny how things happen. I told my Dr I was going to kick him in the shins the next time I saw him :D

Mirry
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Postby 1hunter » Fri Aug 13, 2010 7:11 am

Mirry,

you should get another opinion...no symptoms except migraines? Did you have a lumbar puncture? You know that migrain headaches can cause brain lesions that look just like lesions from MS
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Postby Mirry » Fri Aug 13, 2010 3:29 pm

Hi hunter

I am going in for another set of MRI's so i'll see what that shows. Didn't know about migraines and lesions though, so thanks for the info.

Only had the lumbar puncture done back in the UK in 1994, this neuro doesnt want to do another one. I think I will ask him to arrange that for me here. Better to have all the tests and facts rather than base it on just the MRI's

Mirry
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Postby Daisy3 » Sat Aug 14, 2010 3:22 am

Lewis,

I have just been on to your website and noticed that you 3 categories for ms types rather than 4. Is that because your putting PPMS and RPMS together?

If you are its not a problem, but i thought I would check.
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