A little knowledge is a bad thing

New diagnosis and before diagnosis
21

[quote=“rizzo”]

I would like to reiterate: NO “personal information shared in private emails was broadcast on the forum without permission”.

I would never do this.

I did not do it.

[/quote] You have done nothing wrong, Karen.

Keep doing what you do.

Seahorse - you have joined an open forum thats here to help people. Karen posted on the forum in case her words could help someone else - not just yourself!

No personal information was shared on the forum that was not there earlier in your thread.

Karen has helped so many people on here and is a valuable member of this forum.

I feel you owe Karen an appology to be honest - not the other way round.

Karen tried to help/advise you and you thank her by posting this thread.

Unbelievable!

Teresa

22

As someone who has also been helped by Karen, all I can do is agree with Treek’s last sentence.

Posting with the incredibly insulting title ‘a little knowledge is a dangerous thing’ was bad enough. Karen has a doctorate in neurosciences and can actually decode those damn MRIs and neurologist’s reports. No one else can do this here and she does that out of sheer generosity of spirit and a genuine wish to help people through the horrible process of diagnosis.

I’ve read the original thread and Karen’s replies and nothing that hadn’t already been vouchsafed was mentioned. What a way to thank someone!

You could have kept your gripes private through pm’s. You chose to blacken the reputation of a very good and decent person by posting and then running. Your posts don’t seem to need her help. You seem very knowledgeable about MS and the diagnostic process. So why did you do this?

23

Hello, I wasn’t going to post but I just really need to say that not only does Karen do all the great things as mentioned by everyone above she does it at the same time as dealing with her own MS. Educating herself in neuroscience, using it to guide people through the limboland hell, that is all you need to realise her intentions are to do nothing but good for anyone that joins here because they are in need. After reading all this, I’m not clear what your intentions were and you could be jeopardising a vital support for the rest of us. I also felt you had forgotten she is a human being. I wish you well I sincerely do but we are all trying to get through this whether diagnosed or in limbo and that includes Karen. Please try and remember that. Sam

24

Seahorse,

I am utterly appalled by your gross, and frankly vindictive, overreaction to Karen’s extremely helpful and informed post.

I’m sure I’m in the same position as most people on here when I say that I didn’t realise that you had been in pm contact with Karen from her reply to your post – you had already revealed all the information in your post. YOU are the one who has informed people that you had requested help from Karen via pm.

I only realised that this had happened from this, your nasty public post, vilifying someone who has MS with all its disabling features herself and yet chooses to spend her own time sharing her professional knowledge in helping others.

Shame on you, I hope that when you ‘return to the forum after you have seen your consultant early next month’ you will have reflected on your behaviour and be ready to apologise to Karen.

Or perhaps you won’t, perhaps you and ‘Serena B’ (who I find very suspicious appears to have joined this forum yesterday purely to support YOU (who has also only joined in the last couple of days) and now says she is ‘signing off’) are just trolls coming on here to have a go at Karen, perhaps because she questioned the antibiotic therapy last week, perhaps because she questions CCSVI and other ‘alternative’ treatments that don’t have statistical evidence of efficacy……Karen is a scientist, she cuts through the crap.

There, I’ve given you the excuse to announce you won’t be coming back here because you’re being bullied………

25

Almost everyone on this forum has a similar story of their lives being turned upside down and we all know how very traumatic and upsetting it can be and how it makes you feel extra sensitive when you feel people don’t give you the support you are looking for…

I don’t post much but I do dip in and out of the forum being that I am a limbolander. I have had my share of consults with unsympathetic and disinterested neurologists, some who blamed my symptoms on anxiety, conversion disorder and the like.

I contacted Karen through the forum and described very personal information regarding my medical history, my symptoms and the trials I have had with trying to get a diagnosis. She could not have been kinder, more considerate or more respectful of me and my situation or my information. And what she did was a great comfort and reassurance to me. I am astonished to read that you think she treated you badly and feel sure there must be some explanation or misunderstanding for what transpired.

I do not believe she would have done anything to compromise the trust you placed in her based on my experience.

S.

26

Karen i hope your listening to all the honest people on here who have found your help so important in helping them understand what is going on with our body’s and translating how neuro’s put it iunto language we understand .

Karen You have no need to feel bad but ignore people like seahorse and serena B who have nothing better to do than ask for help and then throw it back in your face …

All i want to say is your help has been invaluable to me through this short time on the forum along with a few others who support each other Karen keep up the good no not good but GREAT work and support .

Mandy x

27

Hi Karen, theres been so many replies to show how well you are thought of. But I understand your feelings and know youll bounce back from this. Cos thats what we do, innit?

luv Pollx

28

I am fully in support of Karen, and don’t believe she did anything wrong, but I would like to say something in support of Seahorse. Obviously, at the time of posting she(?) was incredibly upset and really felt that Karen had revealed personal information about her. Now, objectively, I don’t see this as being the case, and neither does pretty much anyone else replying, but Seahorse DID believe this to be true. Ok, so she went about addressing it in the wrong way, but we all make mistakes, and it’s even easier to jump to conclusions and make mistakes when you’re suffering from weird, unexplained symptoms and have been messed around by medical professionals. To then believe that this had happened must have been quite a shock. I do hope that Seahorse comes to see that Karen didn’t do anything, but I’d also like to think that she can still come here for support. Isn’t that what we all need? And when things are so emotionally traumatic, all the more so. Essentially, yes, I’d like Seahorse to see that she was mistaken (both in terms of apologising to Karen, but also because I’ve no doubt it would make her feel better), but I wouldn’t want one misunderstanding to block her off from the brilliant support this forum supplies.

Basically, I know Karen is a massive help, both directly to those asking questions and indirectly to those that read and take encouragement from her very informative posts, and I would be gutted if anything happened to cause her to stop posting, but Seahorse is a person too, and clearly one who is struggling. I’m happy that people are supporting Karen (I do!) but I’m slightly uncomfortable with some of the posts attacking Seahorse.

Feel free to ignore me (I am a newbie myself after all!), but I had to try!

29

This makes me so sad, we all come on here hoping for some support and advice, Karen has helped so many people including me, I am sure she would never upset anyone intentionally and always comes across as an honest and understanding person. Sorry Seahorse, perhaps you are feeling very worried and vulnerable at the moment and needed to lash out because of this bloody illness, which I can fully understand, but we all like to keep this forum as friendly, informative, supportive and most of all a happy place to be.

30

I am just going to add that I am really sorry Seahorse that you seem to have taken Karens actions out of context. Karen has been an amazing support for many people on here, and I cannot for one minute believe that she would ever have done anything to upset you (or anyone).

Karen has always given the kind of advice we all need when we are in shock from diagnosis or from the disabling symptoms that have brought us to this forum. The advice is to the point and easy for us (less scientific people) to understand.

I can understand and see that you are obviously upset Seahorse, but I personally believe that you should have PMd Karen to give her a chance to remove the post, instead of writing this post. I think it is just really sad that you felt the need to write this at all.

Paula xx

31

Just re-iterating what I’ve said before. Karen is a major part of this community and we don’t want to lose her. No if’s or but’s about it. She’s the gel holding it all together here.

But I think there has been a misunderstanding and I agree seahorse should have PM’d Karen privately about how she felt about the situation. But she’s human and it’s not right to single someone out - she’s going through the same as we are and I’d hate for someone to feel like they can’t come back and get support when they have a genuine medical condition. Just think about how irratable, or upset we’ve felt at times. It’s so easy to lash out at people without realisng. Imagine if she is feeling quite bad about what’s she’s done and then reads some of the not so nice posts - think about how difficult it would be to come and appologise even if she wanted to.

I know you’re all doing it in support of Karen, but we shouldn’t do it at the expense of hurting somebody else’s feelings or singling them out. We’re no better than her then. I’m not justifyinmg what she’s done - Karen’s appologsied and I think she should too.

And Karen if you’re out there we want you back, please don’t let one person’s comment make you feel bad. Look at how many voices here have come to your defence. We’re all greatful for the time and advice you give us.

Reemz

32

You use your second post to damn someone who tried to help you following your first post?

33

Just a question. On the other thread seahorses name is followed by (not verified) and you can’t click on it to view profile. Why is that?

34

Fantastic response Anu!

Perhaps Seahorse (Serena B) is a little upset that Karen questioned the antibiotic theory?

Karen is a Scientist after all. Would not expect any different as there is no scientific evidence to back up the claims.

Teresa.x

35

Hi Treek,

It just seems a little odd that a (seemingly very well informed) ‘newbie’ arrives, pm’s Karen for support, when Karen gives this, without breaking any confidentiality that I can see, via the board, ‘Seahorse’ (aka Serena B?) immediately rips into her…with a very long and detailed character assasination…I’ve seen trolls before on here, just seems odd in view of Karen’s statistical evidence against last week’s latest ‘cure’…maybe I’m just an old cynic…

36

Couldn’t care less if Karen did it; didn’t do it whatever.

I BACK KAREN 100% AND SEEHOURSE SHOULD P OFF; OTHERWISE A LOT OF PEOPLE WILL NOT GET MUCH CONFIDENTIAL; GOOD INFO.

George

37

I feel so sad that any newbie reading seahorses response to such a genuine offer of support from Karen would’ve been put off from posting on here, for fear of using the wrong words of support on other threads. I am worried now in case I use the wrong words here. Just know that normally all support is usually given and received with a kind heart and an understanding that we are all in the same boat…one way or another! In my short time here I have thankfully never seen such a personal statement about any member of our community. Please feel welcome it is such an amazing place to come and ask for help. Mish x

38

I’ve just read these posts and I can’t quite understand…

Seahorse has asked a question… didn’t really like the reply or the way it was replied publicly, she is entitled to not like anybodies replies, it s a free country, but instead of pm’ing Karen to tell her she didn’t like the reply… she ranted publicy… therefore making all other people on this forum who where otherwise unaware of the initial question/reply quite aware of her problem which she didn’t want other people to know about… ???

Really can’t get my head around it.

I’d just like to say though. Karen has been a world of help to me over the years. I value her answers and always look out for her posts. I actualy feel disappointed if Karen doesn’t reply!! :slight_smile:

Karen, I hope you carry on replying and helping us all here… we value you very much!

39

I’m in complete agreement with Anu.

There are several things about the posts made by seahorse and serenab (who I think are one and the same person anyway!) that just don’t ring true to me at all!

I have never known Karen (Rizzo) to break confidentiality - and like many others I’ve been around here for several years now. She’s been nothing but a tower of strength to a lot of people.

Everyone is entitled to their own opinion of course but mine is that these boards are for people who are looking for help, advice and support not to rant on publicly about something which a simple pm would have sorted out.

Hopefully these events haven’t put off any newbies from coming back…

Debbie xx

40

Anu,

I completely agree with you here.

I too must be an old cynic.

You posted exactly what i was thinking. I’ve never seen a post by a newbie who was so well informed.

I smell a rat! It’s a big one!

George - you made me laugh out loud!

I would like to say though that no-one wants to put off any newbies here at all and everyone is welcome - but theres more to this than meets the eye.

Perhaps it’s time to move on though and get back to the happy community that we are. Without trolls hopefully.

Teresa.x