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Dropping Like Flies

Hello Everyone,

I used to think that MS was a relatively unusual illness, but these last few years has left me eating my words. There (for instance) used to be two people with MS in our large village (other than me), but now there at least five. My MS nurse agrees that there are more and more people with MS, but she thinks that this is only because the diagnoses methods are better, rather than there being more people with the disease around. What does everyone else think?

Best Wishes to all,

Moira

I am sure that there are more than 100,000 people in the UK with MS - that’s the number quoted on the first page of this web site and in many other places.

Within about 300 yards of my house there are 2 neighbours with MS and 3 more with close relatives who have it.

I’m not sure if it’s because they’ve got better at diagnosing it or if it’s because there are more cases but I think that statistic is out of date!

Hi Moira,

I agree with your nurse that, in the past, a lot of people would have gone undiagnosed. I reckon MS has probably always been around - or for a very long time, anyway - and isn’t just a product of our modern way of life.

It’s just that past generations were less likely to be diagnosed (I don’t think it even had a name 'til the 1800s some time, therefore nobody could be diagnosed with it before then), or were more likely to be misdiagnosed. Women, in particular, with multiple non-specific symptoms, which seemed to come and go, were often dismissed as “hysterical”.

You can understand the scepticism. If someone insisted they went blind or couldn’t walk “for no reason”, but after several weeks recovered, also “for no reason”, you’d suspect a psych problem, if you didn’t know about the weird behaviour of MS!

Tina

x

[quote=“Rabbit Fan”]

Hello Everyone,

I used to think that MS was a relatively unusual illness, but these last few years has left me eating my words. There (for instance) used to be two people with MS in our large village (other than me), but now there at least five. My MS nurse agrees that there are more and more people with MS, but she thinks that this is only because the diagnoses methods are better, rather than there being more people with the disease around. What does everyone else think?

Best Wishes to all,

Moira

[/quote] #

Hi, back in 1999, when I joined the MS world, literature read there were around 85,000 people with MS in uk. This number remained the same for years and then sudddenly it changed to 100,000…these figures are like the weather…very changeable!

luv Pollx

[quote=“MS43”]

If the percentage affected remained roughly constant, but the population grew dramatically (which it has), wouldn’t that explain things?

I don’t know how often population figures get updated, but census is only every ten years, so perhaps that would explain the sudden leap?

I do think it’s shocking that we don’t actually know how many people in Britain today have been diagnosed with it. Barring “difficult” cases like yourself, where the diagnosis still isn’t certain after years, I would have thought diagnosis was an easy event to count. Everybody gets a letter, or some sort of formal communication of the diagnosis, and it goes on their medical record. So how can we still not know how many we are diagnosing.

I wonder if the statistics for other serious conditions are recorded, or if they’re all just estimates too?

Tina

x

Know what you mean Moira, there are at least 5 people who live in a nearby road and several in my drive. Not all at the same time but it certainly seems more common, or perhaps it’s that people understand it better and are dx more easily. I know that seems strange as getting a dx seems so difficult for some people. Anyway I come from the SE of England where we are supposed to get more sunlight.

I do wonder about Chernobyl!!! .

Wendyxx

When I tell people I have MS - they nearly always say ‘oh yes… so and so had it’ I say ‘yes, it’s very common’!!

Makes me think that maybe when Jesus performed his miracles the people had MS?

Jen x

Oh snap Jen, I’ve just posted something similar, great minds think alike!

Wendyx

Moiora

There may well be others in your village with m.s. but they haven’t ‘come out’

There is no figure on how many people in the UK have a diagnosis of MS. This would be so easy to find.Central Government simply ask every PCT in the Realm how many cases they have on the books,a double check to ensure people aren’t on the list two or three times,and there it is .I reckon 200,00 is a fair estimate

It has never suited any Government to do this because there would be a huge hole in funding for MS Services and who wants to spend £ Billions filling that.It won’t be happening any time soon.It would never happen but all MS sufferers voting as a block could easily shift Governments

Due to t’Internet and better access to medical services more people are being diagnosed and there are less Limbo Landers. The Medics have always known that the diagnosis is life changing and have chosen not to diagnose when it suited them.Suicide on diagnosis is an issue and Debby Purdy makes her case very well but frightens the living sh1t out of some people.

Disabled people in general get out and about more than previously due to OTs,Social Workers,Societies like this one,Mobility money,cheap Scooters etc blah blah. Hence there are greater chances that there are more MS ers on the streets.

Wb

ps Whenever somebody has the strength of character to ask what is the matter, I always say Multiple Sclerosis and not MS to avoid any confusion as to what is what