There’s a good reason our neurologists and MS nurses warn us not to google MS. A tweet went round recently with a link to a website that promised to diagnose you with MS or not, just by answering 12 simple questions (here).
I took the quiz, with the knowledge I have already been diagnosed with highly-active relapsing MS. The website’s Androctor Anna, however, gave me unexpected news – ‘I screened you for multiple sclerosis. Based on your answers, you don’t fit the diagnostic criteria for the screened disease.’
I admit, when my neurologist first diagnosed me with Clinically Isolated Syndrome, which may or may not lead to MS, then told me not to look for answers on the internet, the first thing I did when I got home was pour myself a stiff drink, boot up the computer and surf. Endlessly. I’ll bet most of you guys did too.
I can laugh at these quizzes now, but if I had found them back then, would it have been a more serious matter? Would it have reassured me? Through trial and and a lot of errors, I eventually stuck to only two websites – The MS Society and the MS Trust. Friends were just as naive as me though – my inbox was flooded with links to various websites. One admonished me for drinking diet Coke, whilst others offered amazing herbal cures or secrets to beating MS, if only I paid hundreds of pounds for the privilege.
More worryingly, other websites chastised me for putting sun cream on my son. By ‘denying’ him vitamin D, I had unwittingly increased his chances of developing MS. And it’s not just internet websites. Have a look at some of the books for sale about beating MS:
- The Hippy Guide to Eliminating Multiple Sclerosis (Sugar Diet Illness)
- Talking Back to MS – How I Beat Multiple Sclerosis Using Low-Dose Naltrexone
- Fighting the Dragon: How I Beat Multiple Sclerosis
I’m sure some of these books have merit, but MS is still an incurable disease. Providing false hope through books, diets or remedies is cruel. MS can be managed, not cured. And are we under pressure to fight back at all costs, rather than concentrate on disease modifying drugs and adjusting to a life with MS?
One thing is certain though, where there is illness, you can be sure there are people out there making money off the back of it.