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Misinformation??

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!)

sorry-i didnt manage to read to the end of ur post!

will try again later!

78% of statistics are wrong! lol! (change % as u see fit!)

ellie

Well there were a few wild and inaccurate statements in that spiel. “The distant past”, well that to me means the 16th century, but you’re talking 40 years ago. Will the mid- 90’s do you? I was diagnosed in the mid 90’s, given MRI and CAT scan, I wasn’t told “go home and rest”. Wasn’t offered any DMD’s either, mind you the MS was not too much bother for the first 10 years.

The research done by the MS Society has been instrumental in great strides in understanding the disease. If many ppl think its curable, they don’t have it! Many people think theres a cure for cancer. Many people think that dialysis is a cure.

The clue, as repeatedly telling the DWP, is in the words, chronic, progressive, irreversable.

Similar here, diagnosed around 1990 never given anything, discharged by neuro, told sod all, symptoms dismissed as my own fault due to lifestyle.

Only reassessed due to rapid deterioration about 4 years ago.

ok I haven’t done myself any favours, and didn’t even bother learning anything about ms, but why would I when I kept being told “it’s your fault your fatigued” or “it’s your fault your backs hanging off” and still I’m told anything and everything rather than “it’s your ms”