To those who've been on the forum for afes

Was just wondering. Of all the many hundreds of people that pass through this forum with MS concerns. Does anyone actually come on and say, it’s definitely not MS it’s this or this …or more of a case that usually MS is the culprit. It seems from the short time I’ve been on here, more people are confirmed as having MS then not. Or maybe it’s just that the people who are given an alternative diagnosis don’t come on and say so. Random thought for a Saturday afternoon!

hi cherry tree some people like to share news, good or bad and others like to keep it to themselves. yes some people tell us that it’s ms. it is a safe way to get used to telling it. some people just leave without saying a word. there is no right or wrong way to do it. random thoughts are a great way to spend a rainy day. my head is full of them. carole x


Lots of people come on here for a short while. They are either diagnosed with MS or not. Some who are diagnosed don’t hang around long, others stay for the company. Such as it is!

I think many people who are diagnosed get sorted with their DMDs and get their heads round the diagnosis then get on with their lives. That’s the way it should be really. They know where to come if they need us.

Others dwell in the misery of limboland. And quite often they come as they get symptoms and tests, then leave for a while, then come back. That’s fine too.

Lots of people don’t have MS. They sometimes come on here and tell us they’ve got a different diagnosis, often they don’t.

I just hope that most of the people who come here for a while then disappear are well and happy. Maybe they look back and remember ‘oh that was when I thought I might have MS, thankfully I didn’t and now I’m fitter, healthier and happier’!!

A lot of us who’ve been here for a long time either have progressive or advanced MS. Some do still have RRMS and are just happy with the loopy company.




are you referring to me as loopy, if so you’re right.

catch me in a bit when i’ve had a tipple or two (or three or eight)

carole x

1 Like

Hi, I’ve only been here a short time and I’m so grateful for the advice and the feeling that I’m not alone and the only one.

i sometimes wonder too what happens to some folk and how they are getting on.

i Thankyou all for this great place xxx

hiya ct what a great question to which sue has replied very well! for me i have been here well over 12 years. when i first visited, like many others, only read without giving any input. i think thats essential initially cos my heid was all over the place! i quite like humans and their behaviour! (that probably means gobby!) through this site i have made many friends-some of whom are no longer with us. in those early days i traveled (because i could!) to belgium, ireland and waaaay down south to meet folk. i am so glad i did as my health deteriorated very quickly and that would be very difficult now. but that contact is still there with the genuine ones. times have changed and social media has kicked in big style, which i understand is useful but is not a patch on face to face contact. am sounding like an old dinosaur now-i really am not but my issues just make it so hard! i have seen lots of things change on this site-as have many others! some for the best-some not but i do appreciate that ‘hey, thats what life is’. we all need to aware of the ‘users’ and 'bad ‘uns’ out there-of course safety is priority but we will suffer more if we lose faith in the good bits in this game of life. to answer your question-those i know did have ms but that was secondary to the friendship. ellie

I am yet to get a diagnosis of MS. I am still working through my first “clinically isolated syndrome” and I found this forum to be a real lifeline for me. People are very knowledgeable and kind and offer great words of support. I certainly intend to pay it forward and whether I get diagnosed with or without I would like to help others who were in a situation similar to mine. Alone and afraid.


Well of course I was. I assumed you and the rest of the Foggies would take ‘loopy’ as the compliment it was supposed to be! Sue x

That is a really nice thought. Eventually, I’ll perhaps find that typing with my thumbs is beyond me, and will be happy to pass the baton to the next generation of MSers.