A little knowledge is a bad thing

New diagnosis and before diagnosis
1

Dear Everyone,

It is with so much regret that I am writing this as a new thread…or writing this at all…but I simply have to be truthful about it.

Anyone who has read my first ever message on this forum (to be or not to be MS) will understand how traumatic my last year has been, not least regarding mis-diagnosis of stroke/brain tumour/MS. My life has been literally torn to pieces over the last year, not just with painful symptoms which have been life-affecting, but with consultants/neurologists who have made bad judgement calls. I didn’t expect the same thing to happen on this forum; not among people who I hoped would empathise with the anxiety of knowing or not knowing if they have MS.

As anyone who has ever joined this forum knows (especially with undiagnosed MS) it takes a lot of personal courage and blind trust to register and talk about herself or himself openly, and without fear, in the hope that fellow members will be similarly trustworthy.

As I say, it is with regret that I trusted someone on this forum, sending them a personal message with information about my neurological condition, including detailed MRI information, in a one-to-one and confidential manner, only for this trust to be exploded yesterday.Not only has this person blown a confidence, they have upset me immeasurably.

It’s so upsetting that Rizzo/Karen, who I approached with a private enquiry about lesions in my brain, should then reply via the open forum without agreement with me first. That would have been the decent and obvious thing to do, wouldn’t it?

Instead, she writes: “I thought we should continue things on here…hope that’s okay?!”, putting it on the open message board. Why not ask me first?

Worse than this, Rizzo also made a hasty and ill-informed judgement about my MRI results, none of which she has seen. I do not have a tumefactive lesion. None of the four neurologists who have seen my MRIs have said there is a tumefaction lesion, including an experienced radio-neurologist at King’s in London. My lesions have always been classified as ‘non-specific’ and without needing further clinical investigation. This would not be the case with a tumefaction.

All of this could and should have been avoided, if personal messages remained personal. I am hoping that anyone with an ounce of decency would agree that personal is personal, and that saying ‘hope that’s okay?’ should be asked privately before making it public? If Rizzo had have asked me, I would have said no, not before I see my neurologist in a few weeks, please.

As it is, I researched tumefactive lesions (which by the way are so rare they are roughly a million to one in the general population) and I discovered that the prognosis of patients with this very particular form of MS is relatively poor in the long term, though tumefactive lesions are so rare that medical evidence is still scant vis a vis RRMS lesions. In any case, my lesion is not tumefactive as Rizzo earlier suggested. It wasn’t small but it was never large enough to be tumefactive and has reduced substantially over the past few months, I’m pleased to say.

It has taken me thirteen months to join the MS forum here, because I was fearful of talking about my symptoms, the calamity that was my diagnosis, and misdiagnosis, and the possibility of MS, just like so many new people on the forum; I trusted one person here and they blew my trust in one day.

I’m sure Rizzo is a well-meaning person and she will have her reasons for posting her message. Having read her other posts, I can see that she is trying to provide information that will help people., those with MS and those who might have it, but there has been a lapse of judgement here, in my case.

Many thanks to all those who have replied to my few messages. I hope to rejoin the forum when I have seen my consultant early next month.

Love and thanks,

seahorse

2

Hi seahorse, there are many people read this forum and Karen is a godsend giving us the understanding we need including specialist info we wouldnt find on the net. For shame you should knock people trying to help you, remember non of us are perfect, this includes you. gollygosh no need for character assinination. Frank

3

I know what you’re saying Frank, but I think seahorse is entitled to be upset if personal information shared in private emails was broadcast on the forum without permission, no matter how well intentioned. Being upset about someone’s action doesn’t equal character assasination, it’s just being upset. I think seahorse is being quite balanced really, being honest about how disclosure of this information made her/him feel personally but recognising that Karen was well intentioned and is a great help to many of us. I’m a great reader of the forums but not a poster until tonight because I’m uncomfortable about putting details of myself ‘out there’, so I can empathise.

4

I think ms affects people differently, in various ways and to varying degrees, ms has affected my emotions or my emotional perceptions mostly as well as whole host of other problems. Karen always offered me good advice and to be fair she has the best looking cerrebelum I’ve ever seen : )))) Sorry for my lame joke there guys n gals but i will not let ms take away my sense of humor, its mine and im keeping it!

5

Sorry for being a bit harsh earlier seahorse. Serena you made a good point, and mikey spot on with the cerebellum observation. Frank

6

Karen has been a massive help to many people and gives her support tirelessly.

I can only begin to imagine how many private messages she recieves on a daily basis and what she was possibly trying to do was to share your answer in the hope of leaving an educating thread for others who may have a similar situation in the future.

As I repeat Karen has been a stalwart comfort to so many people that I would hate to lose her for all of those who love and appreciate her advice because one person is unhappy at the help/advice she has offered and the way it was offered.

Forums are about sharing…I said coincidentally that Karen deserves an MBE yesterday on a separate thread and I stand by it.

She is a pair of open arms guiding people on their passage through diagnosis.

7

I am so sorry Seahorse. The “hope that’s OK” was a throwaway comment, tbh, as I had absolutely no intention of revealing anything that you hadn’t already stated on the forum - I would never knowingly do this! (The two lesions were already on your thread, plus the fact that one had been seen on CT and confused with a tumour - this is only possible if it is large.) I apologise unreservedly, however, as I have obviously caused you distress, however unwittingly.

The link I posted actually stated that people with tumefactive lesions did WELL and often had a second episode later than other people (average of 5 years). You said that you had done a lot of research yourself, so I (clearly mistakenly) thought that you would find this helpful.

Sorry again.

Karen x

8

In my defence, I said nothing in my reply that I would not have said if we had never had a pm conversation. The only way that a CT scan could cause a stroke and then tumour scare is for a lesion to be a large one, at which point the word tumefactive may have been mentioned (because as far as I know that’s what they’re called) and a link provided to show that they are not so terrible after all.

The only difference would have been that I would have said “it sounds like your lesion” instead of “seahorse’s lesion”.

9

Gillian, i don’t think anybody, including seahorse, would want KAren to leave the forum. But if as you say its about sharing, then surely it’s ok to say that something has made you feel bad, just as much as its ok to share feelings of gratitude. If not people will have to self censor to be welcome here. We all go through so much that it’s to be expected that those of us in the middle of complicated situations with our neuros might be sensitive and scared. Karen keep on keeping. Seahorse, good luck and hang in there. That’s probably me signing off now, but I’ll keep on reading because it’s good to know that you are all out there.

10

Just wanted to say, that when I read the original thread, I honestly didn’t think Karen had revealed anything new in her post, apart from the word ‘tumefactive’. I do understand that you are upset and feel that your trust in someone has been misplaced but I hope you see later that Karen was trying to help, and that she didn’t really reveal anything you hadn’t said yourself. I am a new member myself, but my time ‘lurking’ and since I started posting I can see what a blessing it is to have Karen on the forums. However, I also know what a big reassurance the forums can be, and know how scared you must be, so I really hope that you feel you can come on here whenever you need to, whether it’s before your next neuro appointment or after.

11

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.

12

Having read Seahorse’s original post under Anon in which she quickly revealed herself to be Seahorse I really can’t see that Karen/Rizzo said anything that Seahorse hadn’t already said publically. I certainly didn’t learn anything about Seahorse from reading Rizzo’s post that I hadn’t already learnt from Seahorse herself.

So Seahorse, I suggest you step back and reread your original post and Rizzo’s public reply (ignoring the PMs) and you’ll see that no confidentiality was broken.

Furthermore because we all use usernames we are all actually anonymous anyway. None of us have any idea who we are in real life so it is pretty difficult to breach confidentiality when we are all anonymous to all intents and purposes.

No harm has been done that I can see.

Belinda

13

Just wanted to make it clear - I was trying to say what Belinda has - albeit it less clearly than she managed!

And can I just offer hugs to all those involved - it must be very upsetting on both ends of this.

14

And, for what it’s worth, “A tumefactive demyelinating lesion (TDL) is a solitary lesion greater than 2 cm that mimics a neoplasm on imaging” (Source: radiopaedia.org).

A neoplasm is a tumour.

Seahorse told us that, after her MRIs, a neurologist said she might have a tumour.

15

Karen … amongst those people that know you and have appreciated your help and tireless support…you don’t need to justify yourself.

It’s a darn shame that someone who helps so much should get lashed out at in this way.

I’m sorry for you Seahorse as being ill makes life very difficult, but threads such as this would be more than enough to put me off coninuing to offer advice if I were Karen…and that would be a real shame.

16

I have felt very alone through this and the forum has been amazing. One of the best people here is Karen. She has helped a lot of us through medical jargon and has deciphered many letters that have baffled the rest of us. Sharing stories helps all of us as it makes the rest of us feel we are not so alone. I didn’t see anything in that thread that I didn’t know. Karen always acts with the best of intentions and many of us couldn’t manage without her knowledge and support. Xxx

17

Karen does not share any members personal information I can vouch for her. I have discussed a lot of details and have shared very sensitive information with Karen, she knows what conditions I’ve been diagnosed with and what medications I’m currently taking.

In my email correspondence she will never ever refer to persons forum name or real name when discussing issues, she will just say my friend x has also been through this. No name nothing just an alphabetical letter.

If Karen’s reply was upsetting and you thought she had shared your personal information there was no need to make a public post blaming Karen for breaching privacy. You could have simply messaged her and asked for clarification.

Karen has not asked me to defend her but somebody who has given me some hope and encouraged me to fight on and not give up I have to defend. She has even seen some of my actual diagnosis letters and would never share any personal information.

I posted a thread here food for thought which didn’t go down well as members were not aware of my personal circumstances, I have removed my anonymity of that post just so that you can have a read of it and realise Karen did not share no information at all she defended me but did not give away personal information.

I do not mean to offend you with my reply but I’ve known Karen for almost a year she is the most caring and helpful member on this forum, she does it for free and on her own free time when she could be doing other things than helping us members out stuck with medical problems.

My reply is not intended to offend you or make you feel bad and I hope you don’t take my reply the wrong way. I know Karen will never breach my privacy and if she does so by mistake I’m the one who decided to share my personal information with her she did not ask for it and if

18

for some reason that information is breached by Karen I am to blame not Karen. I don’t know what happened I couldn’t finish of my reply.

19

Hi Seahorse, I’m sorry that you have been upset and may be yet more upset by some of the replies to your post. Please don’t think that you are unable to make further posts. This community is here to support all and as you can see, Karen is a very valued member and helps a lot of people. I would just like to suggest that a simple PM to her may have been a better way to resolve any issues you had with her post.

Mags xx

20

Hi Seahorse firstly sorry that you’re upset and you feel your confidentiality has been breached. I can understand how difficult it is to come onto the forum and discuss your issues. So well done for overcoming that milestone.

I have to say the time I’ve been on this forum I’ve never seen Karen knowingly breach any confidentiality. She’s been supportive, understanding, a kick up the backside if we’ve needed it and a wealth of information.

I think there’s a few things here.

First that none of us know who is who here anyway so it doesn’t really matter. It’s not like we’re going to bump into you in the street and say hey you’re the one with… But I guess if for whatever reason your uncomfy with something being up for all eyes then you’re uncomfy. Each to their own I guess. But maybe a private discussion to tell her how you felt would have been better. It’s a bit like she’s done that to me so I’m going to do the same back.

Second - Karen replies to so many posts and PM’s. I think without her this community wouldn’t feel like a community. I have to add I did read the posts and couldn’t see any breach but even if there was I think we need to cut her some slack. She’s not a doctor and she spends a lot of time dedicated to helping us which she doesn’t have to.

Thirdly Seahorse a mix up has happened. There’s no point saying she said this and he said this. The milk is spilt. Either way if you leave, you’ll lose out on the support of many people here who will understand the difficulties you’ve been facing. Don’t let one bad experience put you off, honestly. Secondly if Karen wasn’t here we’d all be quiete sad frankly, she has helped a lot of us.

So I think overall a mix communication has happened but ultimately this forum is here to help here and support people not knock them down.

Reemz