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If only 0.12% of the population have MS, then how come everyone seems to know someone with MS?

Just curious.

Hope you’re all well.

Please free to suggest I need a crash course in statistical modelling…

CP

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Lol I shouldn’t worry about statistical modelling get yourself a board and a piece of rope hang board from neck with rope after writing “I have MS” on board and then explain life ain’t good days and bad days to everyone you talk to. Everyone has the idea we are ok most of the time, I’d like to see them cope with our good days let alone our bad ones. X Don

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What percentage have PPMS? Are we doubly blessed/cursed?

M x

The MS Society will have all the data

Boudsx

Interesting question! I knew 8 people with MS before I was diagnosed, all in the same village and 1 in the village I moved from (my next door neighbour) these villages are close, half a mile as the crow flies, but not sure whether it would be enough to count as a cluster. I know a professor at Keele was looking into this re. a local factory and environmental facors, I had forgotten until I saw your question! I had a few coversations with him. I know his funding was running out, this was all to do with aluminium, going to have to find out what happened, probably still got the number in my precious purple address book!

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Although I knew about ms I didn’t know of anyone who had it

And here I am 30 years later

I didnt know anyone with MS 23 years ago…before it moved in with me.

Boudsx

Nor me Bouds and I had never heard of it… certainly know what it is now!

Pam x

PPMS affects 10 - 15% diagnosed with MS.

Stay safe guys, M x

We are a very special group or the gang, M

The only other MSers I know are through the hospice or a local MS group.

Otherwise I would only know you fab lot!

Boudsx

They’ll have spoken to a second cousins pal who babysits for his neighbour who knows a colleague who shops at the same supermarket with a petrol station, where the cashier has a sister with MS. They won’t even know there’s 4 types of MS.

A mathematician from Cheshire estimated there are 120,000 MS patients out of 66million UK residents. An average 12% of those have a PPMS diagnosis.

As PPMS is the only type with a 50/50 male/female ratio, there are only 7200 males & 7200 females with PPMS.

Out of 66 million residents, PPMS is very rare, and for such a low proportion, not enough resources for treatment never mind a cure.

I think we’ve all met someone who knows someone with MS.

Chrissie x

I knew quire a few before i got my diagnosis.My best mates mum had just died from it.My sisters mum in law had it severe and also died few yr after my diagnosis.My mum had a distant relative with it and he lived to a good old age.My sons school friend had also just lost his mum to it when he was a teenager.So when i finally did get my MS diagnosis i was scared to death and thought it was a death sentance for me.I was so scared as i was very aware just how bad it can be for some.But here i still am nearly 30yrs later.Not very mobile and not well at all but still here.

Hi jaydee, I believe people dont die of MS…more like they die with it.

In rare cases, MS can make you prone to other very weakening conditions and hence incapable of fighting it.

Please try not to think of MS as a death sentence. I dont see it like that and I hope others here feel the same.

Boudsx

I dont see it as a death sentence poll but i did 30yrs back when i was first diagnosed and knew all those that had sadly died from it.x

PPMS IS actually RARE.

10-15,000 People in UK are diagnosed with it when over 100,000 are diagnsed with RRMS.

at beginning they thought i had Lupus. I had to have bloods the nurse didnt even know what bottles to use as they never had one patient with lupus in the surgery lol. so i think a few auto immune back 20 years ago were rarer then they are now.

My daughter has lupus…and hashimotos form of thyroid deficiency and liver hemangiomas…and bulging spinal discs…and RA…and is gluten intolerant…luckily (!) she doesnt have MS as well!

Jaydee…when I was first told I may have MS, I also thought it was a fatal disease. Chuffin glad it aint!

Boudsx

I live in a rural Cumbria and my MS Nurse said she has over 250 patients on her books. I thought I understood ms reasonably well having had quite a few patients with it over the years. Boy was I wrong… basically clueless. Take care everyone Cath x

Cursed