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Where have everyone gone

I don’t get on here very often (as back problem won’t allow me) but the last few questions I’ve asked, I haven’t had very much response. Perhaps they were questions that didn’t have an answer

I know there are other ms sites (I was asked to join one quite recently), to help other people with ms, it was a forum for ‘genetic diseases’, I was rather surprised and a little upset about this, I know there is an element of genetics with this disease but wasn’t aware that ms is now considered a ‘genetic disease’.

I digress and I’m going on, where has everyone gone please, this used to be such a busy site.

Wendy x

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Yea Wendy - not as busy as it used to be but folk still generally try to help…hope your back improves…

Thanks for your reply Redman, it does seem very quiet, thank you for the kind words, perhaps my questions have been out of the realms of knowledge. I do seem to get more response on the ppms board.

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Hi Wendy,

I did not know the answer to your last question, and it seemed pointless to reply, just to say: “Sorry, I don’t know”.

With hindsight, sorry if it seemed rude or uncaring to leave it unanswered - I just didn’t have the knowledge.

Personally, I would stay well clear of the forum for genetic diseases (your choice, of course), as MS is NOT a genetic disease. If they are telling people it is, you don’t know what other misinformation you could be getting from that site, as they don’t seem a trustworthy source.

Yes, susceptibility to MS is influenced by genetics (as is susceptibility to a lot of things), but that does NOT make it a “genetic disease”.

If a website or forum is saying stuff that you know or have reason to believe is wrong, my advice is to steer clear of it. You’ll never know where you stand with anything they say. You are right, they are wrong - “genetic disease” - Piddle!

Tina

x

allo Wendy.

I still look in here most days, but only reply if I think have something to offer. I guess I didnt to your`s…sorry!

luv Pollx

I still look in from time to time but to be honest I did rely on this forum for cheering up purposes on my bad days from those who understand and as the cheeriness seems to have almost disappeared I tend to look elsewhere.

Wendy, it’s my personal view that as the forum is less of a happy place people are not participating as they used to.

MS is such a miserable disease a little happiness isn’t much to ask.

Hope you are ok Wendy.

Shazzie xx

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Wendy, like Tina if I don’t think I have anything to offer, I also keep quiet, but hellooooo

I do think the forum tends towards Q&A, as I guess people at different stages need answers etc, but I think people have made efforts to try and lighten the loads of many, there have been several funny themes etc, and I for one have thoroughly enjoyed them. Possibly people just talk about MS related stuff because that’s what’s prudent for the site and therefore prob seems a little glum at times (although vital and very necessary!).

So, let’s start a more upbeat trend and don’t mention the ms

…just cooked a stew, so that’s tea sorted, so although it’s a very grey, wet day I can look forward to my glass of red and a stew, and the kids moaning coz it’s not chips…

what has everyone else done, read, listened to, talked about etc this afternoon???

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Thank you for all your answers and I do agree it’s no good replying if you don’t know the answer and my question was rather difficult to answer; as I can’t for the life of me remember the name of the steroids my doctor gave me in the first place and although she’s been quite helpful (since my dx), she obviously didn’t have the knowledge that the Neurologist had.

(Doctor’s steroids have left me with permanent damage to my feet), Neurologist’s steroids helped quite a bit.

I’m sure there’s still support for people with normal drug queries and relapses but must say I’ve found the board a less cheerful (without Wobblyboy and alike).

Oh I’ve been resting my back and listening to radio, will be watching Holby City after tea.

Wendy x

Ps, you are right Tina ms isn’t simply a genetic disease, so disregarding my back problems, I won’t be joining that site. xx

I think forums generally have been in decline for some time and we probably have facebook to thank for that. Thankfully, this one has been holding up reasonably well and should be around for a while yet.

I hope that dodgy back starts easing soon.

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Thanks Whammel

Well that’s good to hear.

My back seems to be an ongoing problem, hopefully it will allow me to come on here now and again.

Wendy x

One day the mystery of m.s. will be unravelled and my guess is that we will realise what a lot of misinformation was peddled in the past.

As someone with a very close relative with m.s. I don’t agree with your assertion that to say m.s. is a genetic disease is ‘piddle!’

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I also have (did have) MS in the family - albeit not a close relative. I still say it’s piddle.

You are more at risk from heart disease and certain types of cancer too, if they are already in the family. But we don’t call those “genetic diseases”. Why should an exception be made for MS?

I have not denied that genetic makeup greatly influences your lifetime risk of MS - however, it doesn’t cause it - hence it’s not a “genetic” disease. Genes influence a whole lot of things in life - possibly even how much you earn. That doesn’t make everything “genetic”, and thus preordained.

Have thought long and hard about replying to this post but then decided why the heck not! My afternoon has been spent getting ready for Halloween fund raiser party for Hospice - children will be present so I thought I’d go as friendly witch. Hair looking a bit grey so got our hair dye, put it on sat down to wait 20 minutes, woke up 2 hours later - folks I’m lucky I still have hair which is now not brown but jet black. Have you ever tried to get 2 hour old hair dye off your forehead, ears, neck? I terrified a lot of kids and my poor husband has still not recovered!

this site might not be used by many but I can say that if it had not been here I would never have coped. I read posts here from that start of my “probable ms” diagnosis 8 months ago, I got answers here that my GP couldn’t give and my neuro wouldn’t give until I got all tests done. Tests done now and answer given last Friday - I am now a fully paid up member of this horrible disease. When I feel down, frightened, confused or in need of a laugh I shall be logging on.

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Sorry to hear of your diagnosis Luly001. I’m sure you will continue to find support here. Shift MS is another forum and pretty busy.

Hi Lulu0001

It’s good that you have found support and help here, it’s just that I’ve been around for a long time and it used to be a lot busier, you often had to bump yourself up when you ended up on page 2 as there were so many participants, also we signed of using our names, I liked that, though I don’t mind being called Corkie,

The main thing is that you are happy, I’m guessing you’re a lot younger than me. Take care

Wendy x

I know you do Polly, you are a consummate poster, I’m not sure you could have given advice, unless you had experience of the other steroids that I couldn’t remember the name of.

Take care

love Wendy x

Some of us are still here Wendy.
Some people moved on when the web-team frowned on some of the more extreme humour that was creeping in.
Some of those ended in a closed Facebook group. For

I don’t share the view that forums have had their day. Certainly, some MS forums are still going strong, while one that I can think of is lucky if it gets one individual post a day. I think that we have enough people to stay in business, when you consider what a wide range of experience and knowledge is represented here.

Geoff

for what its worth, im still here wendy. i agree with geoff’s point that the veto of organised humour appears to have had an adverse affect on activity, but that said i may be wrong (and hope im not) in thinking there is a site that everyone else has gone to for all the answers!

i would imagine that there are enough people on here who are able to positively contribute to an answer would do, if not i think the phrase ‘if you don’t at first succeed, try try again’ as a way forward! i have usually found this a very supportive forum, but there are, one suspects, inevitable lull periods.

anyway, take care and i hope you obtain the necessary answers you need. ‘ask them, they will come’

fluffyollie xx

hiya wendy!

i am still here but not as much cos life so different for me now!

10 years i have been lurking! used to be daily but now with all my issues i cant get here regularly-carers and just life!

i have made some fantastic friends through this site but tend to text cos thats easier these days than getting computer on!

so newbies do not underestimate the value of this site! what u see on screen is just a tiny part of it!

when i was able i visited many including abroad and i am so glad i did!

be happy all, eleanor x

Thank you for all your replies, I do have a friend in Tasmania who I met on here, we keep in touch as much as ms will allow us but I suppose things don’t stay the same in life, as I’m coming up to a quite large birthday soon, I’m at that stage in life where I don’t like too much change. I will continue to keep in touch with the board but like eleanor it’s not always easy for me to get on here.

Take care all of you wonderful people, love Wendy x