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Clinically isolated syndrome

Just wondered how this is diagnosed ? Because technically couldn’t a person have Ms just missed the symptoms in the past ?

Symptoms the person has had in the past, but didn’t notice, by definition can’t count, as only clinically verified evidence (by a neurologist) is acceptable.

With hindsight, I’m sure I had MS for years before diagnosis, but I don’t feel that means I should, or even could have been diagnosed sooner. Taking into account things that weren’t even bad enough for me to go to the doctor about wouldn’t be a very scientific way of diagnosing - as nobody witnessed them, apart from me, and without having been examined, I might be right OR wrong that they were my earliest signs, as they could have been anything. Circumstantial evidence cannot get you a diagnosis.

Counting is from your first verified attack - or CIS.

Tina

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Thanks Tina

I’ve had some symptoms in the past too , but could be unrelated or related who knows !

Unfortunately, you will never know.

If you’re like me, you will gradually recall more and more things, and think: “Well, that was a bit odd.”, but in terms of diagnosis they’re water under the bridge, as you can never go back and find out what they really were, and whether your hunch is right.

I think it’s quite common for people to feel, with hindsight, that something was “not quite right” for anything up to years before the first official findings, but it’s not provable.

When I say: “not provable”, my neurologist believes I’m probably right when I talk about things happening in my 20s (I was diagnosed aged 44) - so he doesn’t think I’m imagining it or making it up. We just can’t go back and verify any of it. And it might have been just a bug or an injury, as I’d originally assumed.

Tina

There’s one school of thought that says that a person has almost always had MS for a while before obvious symptoms appear.

That certainly wasn’t how it felt to me - my MS went from nought to sixty over 48 hours, although no one was calling it MS then, of course although everybody including me was thinking it. But who knows how long it had been brewing?

Tina is right about doctors pretty much disregarding (for dx purposes) anything that has happened in the past unless another doctor noted it. But that’s not to say they’re not interested. History - even just self-reported history - all helps to build up the picture. It just doesn’t ‘count’ towards a formal MS dx. As my neurologist said to me, ‘There’s no such thing as single sclerosis.’ Go away and hope it doesn’t happen again was the advice back then and, I expect, still is.

Alison

Thanks Alison . I guess some of the symptoms can be attributed to other illnesses and vice versa . Also Ms can produce such a wide range of symptoms.

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With it being an inheritable disease, i figure i have had MS my whole life (thanks mum!) but its mild / gentle onset versus my general good health meant that the effects of any lesions and thus symptoms were short lived and barely noticeable.

With time and lesion accumulation however, this status changes and then one day… diagnosis.

For me, i have not really had any moments of hindsight that make me think “oh now it makes sense…” The only relapse i consider to be significant was the one that lead to my diagnosis and it followed a few weeks after a very stressful month of house moving.

When i went to the neurologist who diagnosed me, he was leaning towards CIS. Then right at the end of the consultation, i made mention, just in passing, that about six months prior i had some weird visual disturbances. He pounced on that like a fat kid on a smartie! He considered my blurry vision to be a relapse in itself and thus, once the lesion rich MRI images returned, he had two occurrences of relapse, plus the lesions to allow the MS stamp to be applied.

I am happy with that to be honest. MS means i can get drugs. CIS means i cannot and i have to wait and see. The badge of MS is a burden that weighs in the back of my mind, but it is also onehelluva motivator to get on with what i can, whilst i can. (Which is something anyone should aspire to whether, whether burdened by disease or not.)

In the meantime, i am also afforded the wonder of denial and shall continue to assume my neurologist is a ‘chancer’; grabbing at straws to get his name down as the referrer to yet another grateful drug company customer.

Until my next relapse, i consider myself to be the unfortunate victim of a stress induced CIS (but is contentedly munching MS pills… just in case)

It’s what works for me. (so far.)

Um…it’s not an inheritable disease, despite a slight tendency to cluster in families.

Several dozen genes have been identified which are thought to contribute to the risk of MS. Therefore naturally, if you share a lot of genes with somebody with MS (i.e. they’re a first degree relative), you will probably have a similar risk profile. However, they cannot pass on MS to you, neither can you pass it on to anybody else. Just genetically similar individuals have similar odds.

If it was hereditary, identical twins would always either both have it…or neither. In reality, the risk of developing MS if your identical twin has it is less than one in three. That shows clearly it’s not inherited, as they’ve got the same genes!

Tina

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My understanding (and you will have to forgive my effort to split semantic hairs,) is that MS is inherited (as described by your increased risk factor due to relativity) but is not ‘genetic’ hence the observation regarding identical twins.

But anyway… we digress.

MS isn’t a hereditary condition, Paolo, and I think it is important to get that straight. You don’t want people wrongly fearing that the writing’s on the wall if there’s MS in their family, or that the kids of people with MS are bound to get it too. Because that’s just wrong. With that in mind, I hope you will forgive my hair-splitting on this one.

Here’s an excerpt from what the reliable MS Trust have to say about heritability of MS:

'MS is not considered hereditary. A hereditary condition is directly transmitted from parent to child or further generations, which is not the case in MS.

One of the elements that combine to cause an individual to develop MS is a genetic susceptibility to the condition. There are currently 110 genes that have each been found to increase the risk of someone developing MS to a small degree. None of them directly causes the condition itself and someone with MS will have a combination of many of these genes.

As family members will share some of the same genes, this does mean that there is a higher risk of developing MS if there is already MS in the family. However, there is no certainty that the particular combination of genes that make a person in one generation susceptible will occur in subsequent generations. Many people diagnosed with MS do not have a family history of the condition.'

And here’s a link to the main article for anyone who’s interested.

Alison

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