I’ve spoken to so many people using online groups and forums about my future treatment. 2 types sprang up. A complete stranger in another country who just wanted to help me and a troll who just wants to discredit me and it doesn’t matter how much information I show them, as far as he is concerned I am out to just steal your money.
So lets talk about my troll dave_a_brown who resides on the health boards of the Daily Mail forum. His claim is to be another MS patient (this could be true). BUT Kept telling me to use LDN – low dose naltrexone. Something that is not available to me, MS Society have said don’t try there isn’t enough evidence to suggest it would work in the UK. But dave_a_brown would insist it would and posted nothing but from the LDN website promoting it. He told me that I should tell you I am just stealing your money as HSCT will not work because “The professional bodies who actually do the procedure in this country say that you and I are not viable patients BECAUSE WE WERE DIAGNOSED MORE THAN TEN YEARS AGO”
Although he does agree it isn’t Neurologists who preform HSCT but Haematologists, although he wouldn’t see that side being why Neurologists don’t like this procedure, is really because they don’t deal with it and so have little knowledge of it. I offered to show him websites of real hospitals doing the procedure, I explained that mine wasn’t a trial, trials have their own set of rules (I think that is what he was stuck on). I offered to introduce him to real live people who have had the procedure from varied backgrounds of MS – RRMS, SPMS PPMS and so on there are loads more with varied lengths of having the disease, from a few years to decades, I offered to meet up and show him paperwork but I did insist media were involved but he declined. Everything I offered as proof he declined, he was just happy to sit behind his screen and throw accusations at me. I am sure if he really was real then police would of been called by now for my theft of your kindly donated money? I wonder why trolls think its funny to cause distress at a time when I need support?
But it’s not all doom and gloom, I love all things Terry Pratchett and there are loads of groups and forums out there dedicated to the great man. And in one such group I found a lovely woman who lives in Australia had her own illness to deal with in the past, just Christmas past she was fresh out of hospital and in a wheelchair, and today running for my Virtual Run. She makes things and rather than be paid she requests the buyer considers one of two needy causes, one being mine. She’s never met me in real life, just over the internet, but she’s no fool, She did her homework she looked into me and what I was doing and the success stories of those who have had HSCT, she came to her own conclusion that I wasn’t out there to deceive anyone. (Hey I hate liars, so why would I want to be one) She knows I keep be seen as transparent in everything I do with any money I am given. If I spend donated money on requested MRI scans then I will have the paperwork to provide to anyone who wanted to see it. Well I do need to have 2 MRI’s with contrast on my brain and spine which will cost about £1200, I need to do these every 6 months until I go to Russia, but as you can see on the about me page the money is not there yet for me to do so. Why do I need to do that. Russia need to monitor my MS progression, if it looks to start getting worse they do shuffle the list and push you up, you are on the list in order of advancement, those who need it sooner get it sooner.
And so back to Rowan my lovely Australian friend, she’s just the type of person I need right now, someone happy to make things and sell and donate funds, If you are like that get in touch you’d be amazed at what help you would be. I am so glad there are so many more nice people out there than our troll dave.
And remember if you are a victim of a troll, don’t stand for it and if you feel something needs to be done then under Malicious Communications Act it can. I won’t be speaking to dave again, if I told him I’d written about him he wouldn’t look, he doesn’t do personal blogs. And as for Rowan, I hope that one day when better I can repay her kindness, she deserves it.