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Back to the drawing board?

Interesting article in my local m.s. publication. Questions the whole concept of RRMS - it seems the disease is ‘active’ even when we think we’re in remission -

Begs the question how long the m.s. may be active before we have our first attack.

Could it be we are born with m.s. and it takes a long time to ‘incubate’ before we are aware of it.

That’s an interesting concept. Kind of turns the whole RR / SP thing in its head too. Like a continuum from asymptomatic to sporadic attacks, then to constant symptoms. Or from asymptomatic to progressive without the RR bit in between. Which of course means the whole idea of labelling any type of MS might be pointless. Or maybe on the other hand, since the same disease progression happens, means the labels are completely appropriate!!

Sue

I’ve always thought mine was active even in remission, whatever the science says.

There’s never been any suggestion that I’m anything but RRMS, but I feel I have gradually deteriorated over many years (most of them before diagnosis), even with few obvious relapses, and most I did have pretty minor.

I realise it’s purely subjective, but my experience is one of feeling gradually more ill (almost like accelerated ageing), but with very few acute episodes.

Tina

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I imagine the terminologies used to categorise MS is more towards its manifestation that its inner workings.

I can quite believe the disease is constant and ongoing, and certain behavioural / environmental factors simply exacerbate things causing the physical presentation of progression / relapse.

Hi, in a word…yes!

I think someone must have had it when they were created, as MS isnt caused by an accident, or by contact with a carrier…etc.

Its like my highly probable HSP....I was 45 before it reared its ugly head and began tearing down the fabric of my life!

pollx

Hi Poll,

I don’t believe we have it from birth - MS, that is. HSP probably, yes, even if the symptoms don’t become apparent 'til midlife.

If MS was present from birth, you would never get just one identical twin with it, because obviously they’re born with identical genes, so if MS was predestined in those genes, they’d have to both get it.

In reality, two thirds of cases of MS in identical twins affect only one of them, meaning it can’t have been present from birth, or even from as far back as conception.

Instead, I think some people are born with the genetic potential to develop MS, but in most cases, it doesn’t materialise. So where it does, something must have happened to “switch it on”. With identical twins, did one get an infection the other managed to dodge? Did they adopt different lifestyles as they grew older, with one getting more sun, and therefore more vitamin D? There must be something that triggers it in one, but not the other. I still don’t believe it’s a lifestyle disease, in the sense that whatever “it” is probably can’t be avoided - such as exposure to a childhood infection. So it’s probably something that was simple bad luck, rather than a bad choice somewhere. But still something must have happened that switches it from just a risk, to the actual disease.

Tina

x

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I agree with Tina. We don’t have it when we are born. We are genetically predisposed to getting it and when we are exposed to the ‘right’ environmental factors i.e. stress, lack of certain vitamins, etc the disease is triggered. It must be the same with all illnesses; cancer, heart disease, etc. I must admit, I went through and enormous amount of stress before my first relapse. I was also deficient in vit b12.

Adrian x

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Hi,

I think of MS like redundancy. Many people have predisposition to get the disease but the circumstances must be right so that the MS bullet strikes you.

Presence of the Epstein Barr Virus is essential, that comes from Glandular Fever but factors like smoking, Vitamin D, lifestyle, diet, geographcal location and even your genetical makeup can influence the likelihood of getting the disease.

To my knowledge no one knows why MS is kicked off within the body. RRMS can be stopped if treated with the correct medicines.

I hope that helps.

Patrick

Buh? frown

He’s in the new Star Wars film Paolo…

You can find lots of information about EBV on the Barts Blog.

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I had food poisoning the year before I started getting symptoms. My torso and face went completely red at one point. Did anybody else have food poisoning?

I’ve never had glandular fever

the force is strong in this one!

No fevered glands, nor poisoned food for quite some time for me.

I do recall getting a mouth full of dirt when i was young, but that was more annoying than anything else.

The only thing of real significance, is a good old dose of ultra-stress, six weeks prior to my first full blown relapse. but by then, the MS lurgy was already within and lurking?

Hello Floppy,

You can be unaware that you have had Glandular Fever. The Epstein Barr virus must be present to get MS

Patrick

Patrick, that has been theorised, but there’s absolutely no proof. You can choose to believe it if you like, and may even be right, but I reserve judgement until anybody proves it.

Nothing has ever been found to definitely, always be present in people who get MS, though there have been lots of candidates, of which EBV is one of the most popular. Still not proof though.

Tina

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hasn’t the same been said about Lyme’s disease - everyone who has m.s. supposedly has Lyme disease antibodies (seemingly Lyme’s is not cause by a tick bite)

What has always surprised me is how little interest the medics take in us from a pathological perspective (is that the right word??) what I mean is we never have our bloods tested for abnormalities.

Hello Anitra,

Well its possible that EBV and occurrence of MS are unrelated. Can I suggest you give these a read

http://bit.ly/1VGrBFC and http://bit.ly/1JULehk

​There is no irrefutable scientific proof EBV and MS are linked but the evidence is very strong. Remember that Glandular fever is known as the kissing disease and lots of people can be infected and not realise it.

Patrick

I’ve never heard that one about Lyme disease, although they certainly have similar symptoms, so it is a differential diagnosis.

I think I was tested for it as part of the investigations - I was tested for over 100 things (yes, that was a lot of vials of blood, but thankfully not a separate one for every test). I didn’t even know the names of most of them, but I think Lyme disease was among them. I know HIV was also on the list - the neuro went out of his way to check my permission for that one - I suppose because the possible implications are such that it’s a bit off to test people without their knowledge and express consent.

I was diagnosed privately, so I don’t know if they do any extra investigations the NHS normally wouldn’t, but as I had the exact same neuro privately that I later transferred to on the NHS, and he seems a pretty ethical kind of guy, I very much doubt he would discriminate between private and NHS patients by ordering different tests. I’m fairly certain the battery of tests he ordered were the same ones he always does, whether it’s private or not - having said that, he may be a bit of a stickler for thoroughness, and not ALL neuros may check everything he wanted to.

From one of Whammel’s links, about 90% of the population have EBV antibodies anyway, which indicates exposure is the norm, rather than the exception. So you’d expect the vast majority of PwMS to have been exposed too.

With something nearly everyone’s been exposed to, it’s very hard to prove it was or wasn’t a causal factor. What we really need is something that’s extremely rare in people who don’t have MS, but high in those who do. Then we’d really have a smoking gun.

But something 90% of people have anyway (but the vast majority don’t get MS) doesn’t make a black-and-white case. If it was EBV, it would still mean there had to be something different about those people who reacted by developing MS, compared to the vast majority who didn’t. So then we’d just be shifting the mystery to: “Why did they react in an abnormal way to something nearly everybody’s had?”

Tina

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