I totally agree with you, and would have wished 30 odd years ago, that there had been a site like this, a place to visit to talk about my utter despair with this dx, and would have wished above all, that I had known someone like Karen who could have given me some advice, and not have been left in the wilderness on my own.
Karen helped me so very much when all this started begining of Feb x I will always be so very grateful to her xxx she’s an absolute gem who voluntarily gives up her time and her knowledge to help others xx despite her own struggles with MS xxx I for one am gutted she’s not on here xxx I miss her!!! xxjenxxx
I too am a newcomer who isn’t quite sure whether I am diagnosed or not or indeed, what has been going on with my body for years. Reading Karen’s advice and detailed posts have been a Godsend to me in understanding, not only the condition but also how to deal with this weird position of trying to fathom feelings and thoughts on MS and even the possibility of it.
I am so sorry to hear she has been upset and glad that I haven’t read that thread as someone who gives so much of themselves to others can only be commended and it is good to see all you regulars and wise ones are supporting her.
Be kind to yourselves and each other and enjoy each day.
Hi all. (And hello to those of you who are wondering who the heck rizzo is Such a lot of newbies in the past couple of weeks!)
I’m fine. Just having a wee break.
I was spending too much time on here and needed to work out a way to still help, but not let the forum take over my life! I still haven’t quite worked that out, but stage one was to ask people on Everyday Living to get more involved. I really hope it works - there’s nothing quite like advice from different people who’ve all been through it personally.
Anyway, I’m sure I’ll be back soon. Perhaps not as much as before though. We’ll see…
In the meantime, it’s important that everyone on here knows that you aren’t restricted to this forum - there is a wealth of experience on the other forums, especially Everyday Living. Don’t be afraid to go and join in!
I have only posted twice and both times Karen was there for good advice, even just looking at other posts on here hers and many more inputs have helped me load x I am at the stage where I look in every day for advice and reassurance keep up the great work every one and missing your input Karen x thanks to everyone
I am one of the newbies and I think Karen was the only person to answer my very first post. I have since read many of Karen’s post and replies and I can’t tell you what a help they have been to me just to help me understand MS, even if that is not what I have got. Karen explains things in a way that is clear and precise but not too ‘jargony’.
She is an invaluable assset to the MS forum/s.
I also know what it is like to become consumed sometimes by a forum that you have your whole heart in. I have Tourette’s syndrome and, nujtil last year, used to run a fourm to help others understand and get some support. I ended up arranging annual ‘Ticnic in the park’ every year in Hyde Park and have made so many friends. 6 years later I am still friends with so many even thnough the fourm was taken down very sadly and nothing to do with me.
It did take over my life for a few years and my husband (now ex) would complain bitterly about the sheer amount of time I was spending moderating the forum. I felt like the members were my family and got too involved, addmittedly. I would often be up all night talking to people with TS who were at their witt’s end. It’s heartbreaking when you can see someone is in so much turmoil, espeically when going through DX, but feeling helpess. Aayway, enough of that.
I hope Karen comes back when she is good and ready. Sometimes a break is just what the doctor ordered.
I already miss you Karen and I don’t even know you!
A practical measure that might help Karen and ourselves by possibly shortening or reducing responses and cutting down repeating queries would be if the Search fuction was far more effective in that people would be more likely to be able to find relevant past threads that already answer their enquiry and others who remember reading them could retrieve them to refer to new enquirants (is that actually a word? I like it anyway). I wonder if knowledge is just bleeding away on here because it seems it is not properly indexed and recorded or readily retrieved and searchable.
Polly you are very wise, sometimes we need to look behind why people post as well as the words they speak.
I don’t think I’ve ever ‘spoken’ to ‘Rizzo’ but have been impressed by the depth of her real, evidence based knowledge and her commitment to keep on answering people, especially newbies when they are scared and afraid and needing real information rather than the bullshit that is so often peddled on here by those with hidden agendas.
I’ve had a look back for the post hmairhi referred to – took some trawling, you have a very good memory hmairi! I think Rizzo was just trying to correct wrong information – what would have been the point in having the info and not sharing it?
It’s sad that ‘muppetnumberone’ felt so sad that she said she won’t be back but I’d suspect she will be, people don’t stay away, they just reincarnate with new id’s.
There seem to be people who come on here with the sole purpose of telling newbies to stay away from DMD’s, that they’d be better having the veins stripped from their necks or relying solely on LDN (in which I personally have a lot of faith – LDN I mean), Rizzo is a valuable counterbalance to the trolls and shills on here and I miss her presence.
It’s important that people have REAL information they can base their decisions on rather than having opinion, superstition and anecdote fed to them by people with an axe to grind and sh*t to stir.
“There seem to be people who come on here with the sole purpose of telling newbies to stay away from DMD’s, that they’d be better having the veins stripped from their necks or relying solely on LDN (in which I personally have a lot of faith – LDN I mean), Rizzo is a valuable counterbalance to the trolls and shills on here and I miss her presence.”
Wow, you have just put the frighteners on me! I am new here and have not come across people like that…yet and I hope I dont!
Rizzo/Karen has helped me already and was the first ‘friendly face’ that I ‘saw’ when I came here a few weeks ago. I didn’t see the spat between her and another member and I am not about to go trawling through posts but these things are usually a misunderstanding and usually there are some raw nerves being triggered or background emotional stuff going on that people don’t know about.
Stripping veins?? Oh that sounds awful! Don’t even want to think about that.