Ditto
I agree something sounded strange there - and what’s even stranger is that they havent even responded - surely if they were that upset they would have posted something back to all this?!
Sorry not sure why that posted three times
This was a particularly difficult reply to compose so I hope you will forgive the length of it. I’d like to do three things: address the original post on this thread, address the “set up” theory and thank everyone who has supported me.
- The original post.
When I first saw it, this post horrified me. I believed that I had desperately upset someone and was absolutely gutted, to say the least. I immediately apologised and, Seahorse, if you are reading this, you believe that what you have posted is true and you had no underlying motive, I am still very sorry that I should have caused you any distress, however unwittingly.
The post makes two accusations. I deny both.
-
That I revealed information that I could only have known from private messages - this is not true. I did not share any personal information from private messages. I would never do this.
-
That I “made a hasty and ill-informed judgement about my MRI results”, referring to my use of the word “tumefactive.” This is trickier to explain, but I also believe it to be untrue. I have already explained that tumefactive is the word applied to larger lesions that can be confused with tumours. Seahorse herself told us that her lesion was seen on CT and was confused with a tumour. I hope this explains my use of the word. As far as the rarity of these lesions goes, Seahorse tells us in this post that they are 1:1,000,000 in the general population. By simple maths, that means they are 1:1000 in the MS population. Rather less rare and certainly heard of before on this forum, e.g. there was a lovely lady on here about 18 months ago who had a tumefactive lesion which was also investigated at King’s. (She doesn’t post now because she is much too busy with her family and her new job.) However, these points concern me less than two others. First, that I made it perfectly clear in my pm to Seahorse that I am not a radiologist or a neurologist; instead I am self taught and could be wrong. I find it quite bizarre, therefore, for her to publicly attack me (in a new thread too) for what she believes to be an error. Second, this post contains information that I was not given - and that information is at odds with Seahorse’s claim to have had her lesion confused with a tumour: she states, “My lesions have always been classified as ‘non-specific’ and without needing further clinical investigation.” Had she told me this, I would not have mentioned tumefaction, but instead queried the reason for the tumour scare. [I have to say that I find it most peculiar that someone sending a private message asking for advice about their MRI does not provide this pretty important information!]
-
The “set up” theory.
I’m sure it must sound like a crazy conspiracy theory to most of you who use the New Diagnosis / Before Diagnosis forum, but this is not unheard of. It is simple to create new usernames and draw in people that you want to discredit or annoy in some way and I am an easy target because of how much I post on this forum and how I believe everyone who posts on here. Spin a story and wait for my response, then string me along and wait for me to make a mistake (or something that can be made to look like a mistake) and then point this out in as public a way as possible. Interestingly, I didn’t respond to the original “to be or not to be” post by Seahorse. I can’t help but wonder if I got the first pm because I didn’t “bite”.
Why would someone do this? Well, I would hope that it was nothing to do with anything that I do on this forum, but I am well known for challenging people on the Everyday Living forum who make unfounded or outrageous claims about DMDs, research, “cures”, etc. Sometimes this can get quite heated. Interestingly, there have been three, very recent threads on there that have become heated, one of which ended in a nasty personal attack on me that was removed by the moderators, one of which the “other side” was rather humiliated and one of which the “other side” refused to answer my questions. Although some of the individuals involved in these are known to use false usernames, I am not saying with any certainty whatsoever that any of them would then launch a vindictive attack on me on here, I am merely pointing out that there are people on the forum who would like to see me “taken down a peg or two” or even hurt. (I include their “fans” in this group too.)
I guess we will never know if this is such an occurrence, but it has certainly got the “feel” of it and I can easily see why some people would suspect it.
- Finally to the most important part! Thank you SO much for all your support (both on here and by pm). It is not an exaggeration to say that this event has been quite horrific to me and your kindness and belief in me has done a huge amount to ease that. I am truly grateful.
Now, back to business as usual!
Karen x
I have just lost my response to Seahorse…mind you it was probably moderated as I was typing it!!!
So come on Seahorse where is your apology to Karen.
I can not believe anyone posting what you did to the rock of this community,you should be ashamed of yourself.
Pip
Sorry about the wonky font colours, lol!
We all back you 100% Karen/rizzo - you have been amazing to every single one of us and to think that there’s someone spiteful enough to try and belittle you - I’m apauled by their attack- unnecessary and hurtful
Karen, As I’m sure you know, I back you 100%.
Without you many of us would still be living in the dark ages when it comes to understanding MS. Never forget how important you are to this forum.
Pat x
I am appalled by this and on reflection it does seem rather ‘fishy’. I back Karen 100 per cent and think that this was a very nasty public attack. Funny that this 'so called’person has not now replied to any of the responses. Teresa xx
Wow - that is appalling if it is all a setup. It’s horrible that people do that. For goodness sake it’s meant to be a forum to help people not gun people down.
I never realised stuff like that could happen on forums like this but if seaside bell is in fact one of these people then she deserves no pity. I guess as Karen said though - we’ll never know.
All I can say is I’m glad we still have Karen here.
Reemz
X
Karen there is no need for you to come on here and defend yourself, we all know its a pack of lies and there are some truly horrible people around. I was at the receiving end of it a few months ago and Its a horrible feeling.
I for one would not still be on this forum if it wasnt for you. I would have given up looking for answers by now without all the advice I have had from you.
The majority of people here are good decent people and all the replies must show how loved you are here.
Hi Reemz, just to make it clear it is Seahorse that caused the problem… not seaside bell.
Similar names but very different people.
Pat x
Woop v sorry seaside bell -no offence meant - it was a silly mistake! I didn’t realise there were two with similar names - sorry just got out of bed, obviousy don’t have my head screwed on yet.
Thanks for telling me Pat
Reemz
X
Karen well done, you have remained the consumate professional throughout…
I believe that this experience should only serve to make you stronger and more confident in your own ability…athough of course it may not feel like that right now.
Gillian
Seahorse, way back in 1998 my symptoms were thought to be due to a brain tumour too. My Dad had gone through the same thing in the 70’s. I was alone and scared when MS was suggested to me. UK forums like this didn’t exist and in desperation turned to an american forum.
To publicly have a go at Karen on an open forum, the post title and then the accusations are contemptible. Karen, would never set out to pubicly harm or hurt someone, but you have by this derogatory post.
We’ve all been frightened at some point and there are some horror stories leading to the correct diagnosis. I can understand your fear but it’s unfair to publicly lash out at someone who genuinely does care about people going through the diagnostic process.
Jacqui
I dont write very often but I read a lot and I must say a lot of Karens posts have helped and put my mind at rest shes always there with words of advice and hugs and always so welcoming when anyones new to the forum this is so sad and I also think if you have a problem with someone you should sort it in private not air you dirty washing in public !!! carry on Karen xxxxxxx
…thanks to Karen… Yes, the person who has been there for so many people. How many people have left this site. I know of four in the past few days. This will certainly be the last time I come on this forum. She has told one person that their neurologist has given them the wrong diagnosis - inferred that I am a liar and in collusion with a drug company which i categorically deny. I am not the only one she has attacked on here. I’m quite sure some of you will have a rant at me now. Well, go for it because I will not be back on here to see it. Just read some of her recent posts on the subject of antibiotics - yet another area of her limitless expertise. Seahorse, I am with you on this! The heading on here should have been ‘online bullying’.
…thanks to Karen… Yes, the person who has been there for so many people. How many people have left this site. I know of four in the past few days. This will certainly be the last time I come on this forum. She has told one person that their neurologist has given them the wrong diagnosis - inferred that I am a liar and in collusion with a drug company which i categorically deny. I am not the only one she has attacked on here. I’m quite sure some of you will have a rant at me now. Well, go for it because I will not be back on here to see it. Just read some of her recent posts on the subject of antibiotics - yet another area of her limitless expertise. Seahorse, I am with you on this! The heading on here should have been ‘online bullying’.
Moderators… can we have this thread removed?? Karen is being bullied and I for one am furious on her behalf.
Thank you,
Pat
I agree Pat
you need to look at the only reply Aimz has made in her profile to see this stinks!!!
Teresa. x