I gather that in the distant past people were diagnosed with m.s. - told to take it easy and sent on their way.
Little was known about m.s.
Fast forward 40 years and the vacuum of ignorance about m.s. has been filled with a load of mis-information.
We have categories of m.s. - all totally flawed - did those dx’d with ppms never have a long forgotten m.s. episode in the past?
Do those dx’d with spms never have parts of them that remain steady or improve. (and who on earth ‘invented’ the terminology - secondary progressive multiple sclerosis - sounds like a state where death is imminent!)
Does anyone really know what r/r means -
And are these lesions we have as relevant as we are led to believe. I think a lot of people who don’t have m.s. have lesions.
‘Candidates’ for HSCT have to have ‘active’ lesions (what on earth are ‘active’ lesions?) - they have to have tried one DMD. This I suspect is because of possible severe side effects of the HSCT - if this is right why on earth is anyone having this HSCT in the first place?
Before they start messing with our immune system have the medics identified what is wrong with our immune system - or is the fault at the area the immune system attacks?
DMD’s - whether you get them is hit and miss, whether they will work is hit and miss. No one really knows why or how they work or even if they are of benefit.
M. S. statistics - who actually produces these - are they accurate/relevant.
e.g. the MS Society say the child of someone with m.s. has a 1/48 chance of getting m.s. - a sibling a 1/37 chance.
It would be interesting to know how these figures were arrived at. If x amount of pwms were asked about the incidence of m.s. in their families and x was made up of predominately only children then the odds for siblings to get m.s. would be low. Conversely if x had a lot of siblings then there is more likely to be more m.s. and the odds for siblings to get m.s. would be wider.
And so those of us with m.s. live in a world of confusion and misinformation - many people think it is easily curable - neuros confuse us with definitions and may prescribe drugs that no empirical evidence has been produced to show their efficacy or otherwise.
(am now going for a lie down!)