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,